In this episode of The Other Side of Cancer, MPN patient advocate Ruth Fein talks to Erin Collins, a death doula and co-founder of the Peaceful Presence Project, about grief literacy and about the benefits of engaging with oneself and loved ones with end of life preferences and decisions well ahead of death.
Transcript
Lizzie Warren:
In this episode of The Other Side of Cancer, MPN patient Ruth Fein talks to Erin Collins, a death doula and the co-founder and program director of The Peaceful Presence Project, about end-of-life decisions and how they can help you live better.
Please note: This subject matter may be difficult for some listeners. It includes discussions of death and dying. Please be advised.
Ruth Fein:
Hi everyone. Welcome to The Other Side of Cancer. I'm Ruth Fein. I'm a health and science writer. I'm also a person who has been living with a rare blood cancer for decades. And I'm thrilled to have as our guest today, Erin Collins. I'm really looking forward to this conversation. Erin is the Program Director for The Peaceful Presence Project, which is a not-for-profit she founded – or co-founded, actually, in 2018. She's a hospice nurse who has extensive training as an end-of-life doula. Welcome, Erin.
Erin Collins:
Thanks so much, Ruth. Nice to be here.
Ruth Fein:
Yeah, it's our pleasure. So I had the enlightening privilege of being in a workshop with her earlier this year, and trust me, we have a lot to talk about this hour, and so much to learn.
So first, I'd like to put our conversation in perspective. To me, one of the beauties of America is this infusion of so many different cultures. I've had friends or colleagues; from Somalia, to Pakistan and Korea, to the Irish Republic, and I'm of Eastern European descent. But while we've blended so many traditions and ways of life when it comes to talking about death and grief and planning for the end of life, we have not exactly embraced the need or, in fact, the benefits to each of us and our loved ones.
So let's start with this fact. Human mortality is 100%, right? I've heard you say this a number of times, and it's a perfect opening. I always chuckle when people say, "If I were to die," when, of course, it is, not if, but when, right?
So, Erin, helping people through this planning and living process has become your life's work. Will you tell us a little about how that came to be?
Erin Collins:
Yeah, absolutely. I had the great privilege to learn, early on, that people die through really what would be expected deaths. My grandparents and uncle, who were older adults and had lived their lives. And when I was 24, I had the opportunity to be at my grandmother's bedside as she was under hospice care. And I just sat with her and watched and observed the nurses come and go in the room, and care for her, preserving her dignity, and really treating her with humanity. And something in my 24-year-old self thought, "That's how I want to show up in the world."
So I had to fast-forward a few years and do my 20s traveling about. And then I went to nursing school when I became – in my early 30s. And when I became a nurse, it was really to work with people at the end of life because of my experience with my grandmother. So I worked first in cancer care. I worked in an inpatient oncology unit for adults and then children. And then went back to working with adults and made the transition to work in hospice care and palliative care. And I worked there for a number of years and saw how, even though we have a really wonderful hospice care system, a lot of people still came to hospice in denial that they were dying – not prepared for it – and therefore experiencing a lot of suffering – both the person who was ill, as well as their family members.
And so I had a couple of experiences with patients who had planned ahead, and were accepting of their death, and thought "There's got to be a better way. There's got to be a way to get our culture talking earlier and planning better for the 100% reality that they will die." And so this was in about 2017, and that's when I learned about the end-of-life doula role and started doing training in that role. Which brought me to now – having a nonprofit organization, a collective of end-of-life doulas, who do a lot of that education, talking about and planning for people's mortality.
Ruth Fein:
So we'll talk a lot today about embracing the reality of death, and how it offers us an opportunity to plan ahead for illness, loss, and grief, right? All of the things that are so much a part of your life. But I'd like to start a conversation, not about dying, but about living. Because we live, we age, and most of us have choices at nearly every turn, right, including planning for when the end of life is closer, or even very close. I think of that old notion of living your epitaph, living today as you want to be remembered on your tombstone, right?
Erin Collins:
Yeah.
Ruth Fein:
Do you think making the end of life more approachable and more comfortable to talk about helps us live, or maybe live differently now, using our mortality as inspiration for living?
Erin Collins:
Absolutely. I think it can inform our choices and inform our decisions differently in a couple of ways, right? For some people, that means they might live a little more wildly, right, knowing that they will die. And so, why not just go for it and be a little more bold? And for other people, it might make them tamper down a little bit to say, "Gosh, okay, I'm living a little too out loud. I'm living a little too wild, and I'm not quite ready for that – life to end unexpectedly."
And so I think that reality and that embracing of it does help us make our decisions, and also helps to frame our relationships differently, and it's something we'll probably talk about in a little while. But how those conversations that we have with the people in our lives, how that might shift, and how the value of our relationships might shift, knowing that they won't always be the way they are today.
Ruth Fein:
Yeah. So rather than digging into our own aging and dying yet, let's talk a little bit about grief literacy – so other people's dying and us dealing with it, right? That's a term I've heard you use. What do you mean when you talk about helping people become more grief-literate?
Erin Collins:
It's a great question and something that we at The Peaceful Presence Project are really passionate about, both grief literacy and death literacy. And grief literacy is the concept or the understanding of the concept of loss, and how to then skillfully respond to that loss – to that understanding – with the understanding that loss is a natural part of living as a human. Grief literacy allows us to respond in a skillful way, and a comforting and supportive way, rather than denying it.
And we've really, as a culture, evolved to push grief aside, and to stigmatize it, and to make it something of an illness, when, in reality, grief is a natural, intrinsic response to loss. It is an emotion and an experience that we need to go through to be able to move forward in our lives after experiencing a loss.
And that can be any loss, right? That's not just the loss of another human being who you knew; that there are so many things that we experience, whether we're aging, or just becoming adults. We lose things like jobs. We lose relationships. We lose pets. There are so many endings or little deaths in the world that we can have a grief response to. And our understanding, as a culture, the more that we can become grief literate, and normalize that experience of grief, the more we are supportive, encouraging, and healthier in the face of loss.
Ruth Fein:
How do we begin to do that? How do we make space for that to happen?
Erin Collins:
One, it comes – there's a systemic response we need to have with education, and that could start in K-12 education: teaching kids about death and loss. And that's as simple as with a beloved class pet who dies and talking through that process. Not covering it up. Not hiding it. And then it comes to colleges, right? A lot of college courses now exist around death and dying and normalizing that conversation. And then it comes down to just making this topic less taboo, so that around the dinner table it can happen, and we can acknowledge each other.
And so, like I said, it is a systemic thing, and it's also an individual process as well, and allowing ourselves to grieve our own losses. And in doing so, we can then support others in grieving their losses as well. And once you've been through the experience and are able to normalize it, then you have the idea of how to show up in a good way for someone because you've had – or maybe you've had an experience that was negative, where somebody said the absolute wrong thing, and I will never say that to somebody who is grieving. And so just through having those experiences and allowing our own grief to surface.
I also think that there's more and more coming out in the media and in entertainment, where we see losses happen, and we see people grieve on screen – that is helpful – and when we see that in a more normal way on screen. So much of our culture is formed by pop culture and what we see and hear. And so those are all the ways that we start to develop this sense of grief literacy and normalize the process.
Ruth Fein:
Yeah. I'm aging myself a bit here. But I remember, several decades ago when I was in college, taking an entire semester course on Elizabeth Kübler-Ross, who was, of course, one of the death and dying gurus of our time. But I don't know that I've seen much change in those decades around the dinner tables.
So, as you say, things come from pop culture, which is encouraging. We're seeing more, hearing more, and reading more, and perhaps it's becoming a little bit more acceptable to talk about grief. But I don't know how we take that next step. How does an individual, perhaps, in their 20s and 30s, approach their parents? Or, in their 30s and 40s, approach their aging parents and start that ball rolling, just to open up a conversation? Any quick pointers on that?
Erin Collins:
Well, what's really interesting about that, Ruth, is I think that's where this culture shift is happening. I think it's in the 20 and 30-year-olds, where there is more comfort in talking about it. And we saw with COVID how much loss there was, and how the grief really came to the forefront. And it was – everybody had to have a conversation, at some point, about what was going on. And so that really did help, I think, catapult a little bit forward.
There are some really great resources out there to start these conversations. But one of the things that's happening, there's – we've done events called Drafts and Directives, where we get some people together at a bar or at a brewery, and they have a pint, and talk about their advance directive, or just talk about death and dying. And there is a lot more acceptance or ability to talk about it in younger generations.
That doesn't mean that it's super-easy to then open that conversation with your parents. But one of the things, especially during COVID, that I found would be helpful is to be able to say, "Gosh, Aunt Mary has COVID and she's on a ventilator. Mom, do you want to be on a ventilator if you get COVID?" Or "I can't believe that Aunt Mary just died from breast cancer. I'm so devastated. It was really beautiful that she was able to come home, and that all of her family was there. Is that what you would want too?" So just relating it to somebody you both know can help to open that conversation. And I've heard a lot of young people just say, "Well, I just want to know what to do when the stuff hits the fan. I just want to know. I don't know anything. We've never had this conversation, and I've got to know what to do."
So there are those openers, and like I said, some really great tools. One that I will plug is called The Conversation Project. And it's on – you can just Google that online – and they've got lots of toolkits or workbooks that are about starting a conversation. They've got tons of fun videos that, in a humorous way, show you how things can go awry, and how you can turn that around and start those conversations.
Ruth Fein:
Those are great suggestions. And some of this is not just for ourselves. A lot of it is for those we leave behind.
Erin Collins:
Mm-hmm (affirmative).
Ruth Fein:
Because you're taking a lot of stress away from the people we've left behind – loved ones – if they know what your choices are, or they know what your wishes are, instead of second-guessing, and perhaps, feeling bad for a long time, that maybe they didn't do what would've been your choice.
So Erin, what's your "top three" list, if there is such a thing, of things that everyone can do to start making space for thinking about and talking about both grief literacy, and also, their own ending days? How do they want it experienced by them and those closest to them? What's on that top three list for you?
Erin Collins:
Such a good question. I think the top thing is to get an advance directive because every adult over the age of 18 should have one. You don't have to be dying. You don't have to be ill to have an advance directive. And once you have that, see what comes up and start a conversation with a safe person. "What do you think happens when we die? Where do you want to die? What would you want the room to smell like?" Just anything off the wall. There are games. There's a great game, called the Death Deck, that can start those conversations.
And then the third thing I would say is to acknowledge all the "little deaths" around us. Acknowledge that the seasons change: that four times a year, a season begins, and a season ends. Notice how plants are regenerated. Notice a pet's death, or the ending of Ted Lasso, right? There's a whole season that's – a whole show that's ended that we can grieve that sadness around that. But just start to normalize the idea that there are little deaths all around us, and there are big deaths all around us, and they're all a normal part of living. And to live well, we can acknowledge that, and we can start stepping into those taboo areas and make it more normal to talk about it.
Ruth Fein:
Yeah. So here you are, an end-of-life doula, right, making a difference in people's lives in such an impactful way. But for most people, they imagine a "death doula" as someone just showing up at a bedside, at the very end of life, to help people through those final days, hours, or even minutes. So walk us through exactly what you do as a doula.
Erin Collins:
So, a couple of things. One is to start on a broader scale: what I do as a doula in the community. And what really brought me into the work was moving away from the impact that I had at the bedside, one-on-one with people, who were dying to say, "What could we do in the community as a whole? What could I do as a nurse?" Almost like a nursing intervention for the community as a whole, and that was getting people talking. So in the community, I do events, or we do events.
One of the best things we do is film discussions, right? So we get people together. There's a film, a documentary, about some aspect of death and dying. We show the movie and then we talk about it, and it brings up a lot of conversations. We do classes and education for all different – for community members, for healthcare workers, all kinds of things.
And then that next phase, or next area of our programming is planning, and we call it holistic end-of-life planning or holistic advance care planning. And this is once that conversation happens and somebody decides, "Okay, I want to plan ahead," we really try to work upstream with people who are healthy or newly diagnosed with a serious illness, to say exactly what you alluded to. "What is this going to look like? Where do I want to be? What types of medical interventions do I want? What don't I want? What do I want to happen as I'm dying? Who should be there? What should it look like, and smell like, and feel like? Who shouldn't be there? With all due respect, do not allow this person at my deathbed. And then, what happens to me afterward, after I've left my body? My life is complete, I have moved on, and this body remains. What do I want to have happen with that?" and that's all part of that holistic planning.
Also involved in that is getting people talking with their loved ones. Not just about what their wishes are, and what they would want to have happen and have this look like, but also, what is left unsaid? Because there is a lot of suffering that comes, not just for the people remaining, but for the person themselves, who is dying, if they haven't been able to say all the things they need to say. And so we work with people in that way as well.
And then once that all evolves and someone is in the dying process, then yes, we're absolutely there. And we work with people anywhere from months, to weeks, to days, just like hospice does. So when we're working with someone over months of their process, we're able to really work on those heartfelt matters, and help them express themselves, whether that's verbally or in writing. We're able to help them create that plan for what those last days look like.
And then we also offer a lot of education, at the bedside, for folks who have never been through a dying process. They've never been with a dying person before, which is part of the death literacy piece, right? How many people have never been witness to a death? And so we're able to work right alongside hospice, ameliorate, and use – give more education about what we're seeing and what's happening, and when you call hospice. When you can just use the resources that are there.
Ruth Fein:
Yeah. I think facing our own mortality is sometimes more difficult than facing others' mortality. I know for myself – when we met – I was at a conference. An amazing conference. Four of the most impactful days, perhaps, of my life.
Erin Collins:
Mm-hmm (affirmative).
Ruth Fein:
It's a conference put on by a not-for-profit called "Bag It." And it's all cancer advocates, from around the world – or actually, from around the country, in this case, and very hand-chosen for the diversity in the room. So every imaginable type of diversity: from rural to urban, and age to ethnicity, obviously. Everything you can think of – sexual orientation. And it's a very small group of 32 people, andhundreds apply, so I felt very privileged to be there.
But what I remember most is that all of the programming was in one room, so none of us had to miss anything by choosing one workshop over another. Except this one day, when we had a choice between three workshops, yours being one of them. And there was somebody at the door for each workshop, directing us to where we should go – which meeting – and I said to the organizer at the door to your workshop, I said, "I'm avoiding that one." And she looked me right in the eyes, and she said, "Ruth, you just told me that that's the one you really should be in."
And I thought about that for only about five seconds. And then I swallowed it, really hard, and I said, "She's right." Not only am I a patient advocate through the health writing that I do, but I host webinars with – patient webinars. But I'm a cancer thriver, as I like to say, rather than a survivor because I've been dealing with a rare blood cancer for nearly 30 years. And chronic cancer is very different than acute cancer, and so there are very different issues for someone who's dealing with something long-term versus, "Let's cut this out. Let's radiate it out. Let's get through and ring that bell that we are survivors."
So there are a lot of different people dealing with a lot of different types of issues, right? But I do remember that I really didn't want to be in that room.
Erin Collins:
(laughs)
Ruth Fein:
And then it was such an amazing conversation, with so many different perspectives, and I'd like to get into that a little bit. So there's a process of end-of-life planning, right? So it's a little bit like estate planning or financial planning, that we think nothing – we don't think twice about doing that, right? But this is for our bodies, our minds, our emotions, our final life experiences, and those of our loved ones.
So, in your workshop, you walked us through some really deep, thoughtful exploration about what we might like our final days to look like, which you alluded to. But here I was in a group full of cancer advocates, many of whom were cancer survivors or thrivers. And still, we were taken by surprise by how many choices we may never have thought about, let alone written them down or discussed them with our loved ones, right? So I remember you referring to something called "end notes" or "roadmap of life" planning. So give us a little more – some specific notes about that.
Erin Collins:
Yeah. So what occurred to us is what you said. That a lot of people go and do estate planning, or do a will, and that's how they end up with an advance directive, right? It is part of the estate planning process. And they end up going through this checklist document with their attorney, and I'll tell you, most attorneys are not necessarily healthcare experts. A lot of attorneys may have never been with a dying person. They may have never been in a hospital where there were intense treatments, and so that expertise may not be there. And so, maybe, some people will ask a physician friend or a nurse friend, but oftentimes they're just trying to get through it, right? Because, as you said, you didn't want to go and talk about that. A lot of people don't.
And so what we came up with, as a team, was the idea that there has to be a better way to do that, and that there are so many steps and so many different things to consider, as you said. So we created this book called End Notes. And it's like you said, we call it a guidebook or a roadmap for planning ahead. And where we started – we have four areas: peace of mind, peace of body, peace of heart, and peace for loved ones. To try and bring a more peaceful approach or an easeful approach to end of life and to planning for it.
And we started with peace of mind because one of our team members said, "I've got to get all of the details out of the way before I can go anywhere else." And also, sometimes the details in the paperwork are an easier entry point. So we get people to go through their healthcare information to list – to one, go through the advance care planning process, whether that's with their physician, their loved ones, or with an end-of-life doula to just talk about what their medical wishes would be. What interventions do they want? What don't they want?
And so we go through that process, and then have them list out "Who's your insurance provider? Who's your doctor? Who are all the contacts that someone would need in the case that something happens to you unexpectedly, or at the end of your life, or at the end of a serious illness?" Still, it's all there. We go through the financial paperwork. "Who are the people you would need to contact? Where are the accounts?" We go through the legal paperwork. "What paper documents would you need? Where are all the passwords? Is all this stuff online?"
Because in my experience with my father-in-law, when he had died or was in the dying process, and we needed to get access to that information, we had no idea. Some, there were a couple of papers in a drawer. So much stuff was online. All his bills were paid online. We had no way to access that. So give people that information. And then, after you've cleared out all of that stuff, and you feel like "Oh, you're accomplished. You've checked the boxes. You've checked all the lists."
Then you get into "Okay. Now, when this happens, where do I want to be?" Some people will choose the hospital. A lot of people will choose home. "So if we take you home, where is home? Where is that environment that you want to be in the home?" Now that might not always be possible. As a hospice nurse, I know that sometimes we're going to bring in a hospital bed that moves, and that might not be able to go up the tiny stairway and into the beautiful room that looks out over the ocean. But ideally, just where is home, where do you want to be, and who's going to be surrounding you?
Do you want certain things to be read to you? Maybe there's a book, poetry, or letters from your mother from years ago, that would be comforting to have read to you. What sounds might be comforting? I'd love to share that this friend of mine, when I first started doing this, he was like, "You know what I want to hear? I want to hear the Flintstones theme song."
Ruth Fein:
(laughs)
Erin Collins:
And he said, "Because that reminds me of my childhood and that time when I was really nurtured and cared for. And I feel like that's what would make me feel really cozy." And are there rituals or practices based on your culture or your spirituality? What things would you like to have happen when somebody is visiting you, or in the space of you taking your last breath? Are there specific things? And then, whether you're in the hospital or the home, those specific things – if they've been communicated – then your family, your friends, your doula, and your healthcare team can try to do everything possible to make that happen to bring that comfort.
And like you said earlier, Ruth, just having it listed – even if it can't be fulfilled completely, having an idea can ease a lot of suffering for the people who you are leaving behind. I remember having a number of patients at the inpatient hospice unit, and their family members would just be so stressed out. "We've never talked about this. I don't know what to do. I don't know what she would want." And we're able, as nurses or as doulas, to say, "It's okay. We're going to do the best that we can."
And that's what we all would hope, right? We're all – nobody's going to be so attached that if it doesn't go exactly as planned, that we're going to strike somebody down from the other side. But it does ease the burden. And to be able to say – there have been people who've said, "My gosh, my dad had everything written out for his funeral. He told me every reading that he wanted, the music, and who he wanted to have speak." And then that was just so – that just brought a lot of ease to the folks – the rest of the family.
Ruth Fein:
Yeah. So, for me, the questions that I had never thought about are now so much more clear after spending a few hours with you. And they're things like, who would I want in the room my last few weeks, days, or hours, right? Would I want to be medicated enough to feel no pain, or just enough to take the edge off, so I can be aware of who's in the room with me?
Erin Collins:
Yeah.
Ruth Fein:
Those kinds of choices, right? And I have come to realize something else, and I don't know if it's a unique thought or if I picked it up somewhere. But more and more people are having celebrations of life when someone passes, right, rather than a traditional funeral. Well, I think we should think about having a celebration of life when our loved one is still with us. I know I don't want to miss mine, right?
Erin Collins:
Yeah.
Ruth Fein:
There are stories, memories, and laughs, and I want to hear it all. I don't want them to necessarily wait till I'm gone. So I thank you for that; helping me to work through that was a really powerful thing.
I'd love to hear a story or two from you. What you've witnessed at the end of someone's life that nearly took your breath away. Something that gives you satisfaction that your work is life-altering or, in fact, death-altering.
Erin Collins:
Yeah. One of our first clients, as a team, was a 52-year-old woman living in a rural part of – we live on the border of rural Oregon and in a more metropolitan area. And this woman lived about 45 minutes outside of town, so away from the nearest hospital. She had a number of lung diseases – hereditary lung diseases – that had progressed at the time from our previous conversation earlier today. It was hot. It was August 2020. COVID was happening. Wildfires were raging. And this woman was dependent on oxygen, and really struggling, and couldn't leave her home.
And she had a friend, who was visiting her weekly and letting her dogs out, and she just said, "I need support. I don't know. I need to know. I need some help. I think she's declining. She doesn't want to talk about that, and I don't know how to talk to her about that. So I need support," and she knew of our organization. So we came in and were introduced to this lovely person who did not want to go there. "I'm not going to talk about hospice. I'm not going to go there." And we said, "That's fine. We're not here to talk about hospice. We're just here to be supportive, anyway we can, so that you feel like you're having some quality of life as we see that you're struggling."
And so she wanted to start talking about what she was going to do with all the things in her house. She had a lot of antiques, and what would she do with all of those? And she had photographs and she was an artist, and what could we do to help her organize that? We said, "Absolutely."
And what actually happened over the next few weeks was we just listened. We were there, two to three times a week, for a few hours at a time. One of us would be there. And it turned out that she really had a lot – she had some strained relationships, and so she just wanted to talk through them. She had a son who she was not talking to and a son who she was talking to, and who lived close by. And so she would just retell the story to go through that process, as she knew that she was dying.
And so, eventually, after about six weeks – well, the other thing that happened is, when she would mention something that was a struggle in her life that we knew hospice could help with, I would gently say, "I know you're not ready for hospice, and I'm not here to push it. But I just need you to know that is a service that they provide. So when the time comes, that will be less of a burden for you." Well, lo and behold, after about six weeks, she said, "You all have made it less scary. I'm ready to enroll in hospice because I think things are turning."
And so we got her enrolled in hospice, and I was able to be there for the day that she was admitted when a nurse came to her home out in the country. So I was able to be there with her and her husband, and just help facilitate and be a comforting presence as she was admitted. Because that was not just an admission to hospice, but an admission, on her part, that she was accepting hospice care.
But what was really magical, she ended up going to the inpatient unit. Her symptoms were pretty bad, and I went to visit her. And she got a phone call, and she looked, and she said, "Oh, my God. It's my son." The one that she wasn't talking to. And I said, "Let me step out of the room so that you can have your conversation." And she said, "No, you have to be here. You have to sit here and hold my hand." And so I did. I sat, and I held her hand, and she had a conversation and was able to say her goodbye, ask for forgiveness, and be forgiven – tell him that she loved him. And he said that he loved her too. And she got off the phone, and she was just awestruck. She said, "I can't believe you just witnessed a miracle." I said, "I know. I'm so grateful that he called." And she said, "That was not the miracle. The miracle was that my doula was here when he called and was here to be my support."
She died two days later. But it was because we had – everything about that situation was the relationship. What I love most about this work is the human-to-human connection. That we were able to build a trusting relationship over several weeks by just showing up and being present. Through that trust, she was able to accept hospice as her care provider. And through the trust of our relationship, she had me stay with her through that conversation. Which, I believe, gave her some strength to hold a very peaceful conversation with her son, and to accept that conversation for what it was, when it was, and where it was.
Ruth Fein:
That says it all. Thanks for sharing that story. Is there something you've seen in the last moments or immediately after a death that also has been, as I said, breath-stopping before?
Erin Collins:
Well, I think it is that last breath. And when you witness that last breath, that isn't always like the movies, where somebody just gasps, closes their eyes, and falls asleep. Sometimes it can be a little more dramatic or a little more of a struggle. And yet, there is a peace that comes over the room when someone takes their last breath. That person becomes – has a more peaceful appearance because that breath has gone, and that moment of – which isn't necessarily the time that they're leaving their body, in my belief, right? The body shuts down.
But as you remember – it may be from our workshop – in most traditions, there's a belief that there's something more than just the physical body. And so when is that moment that that leaves? And sometimes we see that moment as well. You can tell the breath – that last breath happens. The peace comes over the room. Because I think that's a signal the struggle is over, right? For so many people, their loved one was in pain, and so that last breath is like, "Oh, okay, it's over for them." There's peace in that. And sometimes it's just exhausting to be with someone if they've been in the dying process for a long time. And so the peace is just the release and the relief that it's over for everyone.
And then there's that moment where, whatever you may believe: the soul, the spirit, as that starts to leave, then there is a recognition or a connection to something beyond to something greater. And that's what I think I remember the most about the hundreds of deaths I've been present for. The peace that comes to the room is that letting go of the struggle, and then the peace that comes in that moment where, maybe, their spirit moves forward and starts to travel on. And I feel like that's something people worry about and are afraid of. What is that going to be like? And in most cases, even the ones where there's a great struggle at the end, I believe that there is a piece in that final transition.
Ruth Fein:
In working with so many families, do you find it's really helpful to be sure that it isn't final when they take that last breath? So, for instance, I envision that people may want to leave the room. They may want – when it's over, it's over, and they may not give themselves the time and space, perhaps, to stay with the one who has just passed. What do you guide people through on that end?
Erin Collins:
Yeah. I absolutely encourage people to stay. To pause. To not rush. There is sometimes this sense of urgency that if someone is on hospice care that "Oh my gosh, we've got to call hospice right away and let them know," and I always say, "There is no rush at all. Let's just be here and recognize."
And there was something created by a nurse several years ago, who created something called "The Pause" for emergency room nurses who went through – they would be caring for a patient. The patient died, and the expectation was they just moved on. "Okay, that's done. We've got to move to the next room." And how much grief and suffering that brought up for those healthcare providers, for those doctors and nurses, because they had to just move on. They weren't allowed the opportunity to grieve. Their grief wasn't normalized. And he created it for healthcare professionals. But it's something that we can all do, which is to pause, after that moment of death, and just take a breath, be present, and acknowledge that person. Acknowledge that life that has been lived.
And so that could be just sitting and telling stories even after they're gone, right? A lot of times, people will tell those stories while they're going through the dying process, which I absolutely encourage. But also, just to sit, whether that means being quiet, and just all resting in that moment. Or it means telling more stories and laughing, and even the awkward things of "Phew! I'm glad that's over," right.? Any of that is normal, expected, and welcomed in that moment. There's no rush when someone takes their last breath. Just be present with what is, because it'll never – it'll only happen that one time for that person.
Ruth Fein:
That's actually a great ending. Thanks so much, Erin Collins. You've been such a pleasure to speak to. And I know we've learned a lot and walked all the way around what we know is true, which is human mortality, is, in fact, 100%. Take good care, and thanks for joining us.
Erin Collins:
Thank you, Ruth.