Episode 70 - Embracing the Human Side of Dying with Caroline Derkson
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Nicole Garton 00:00:02 Hello and welcome to Your Estate Matters presented by Heritage Trust. Your Estate Matters is a podcast dedicated to everything estates, including building and preserving your legacy. If it's estate related, we'll be talking about it. We're having the conversations today that will help Canadians protect their families, their assets and their legacies tomorrow.
Hello and welcome to Your Estate Matters. I'm Nicole Garton.
On this podcast, we spend a lot of time on the legal and financial architecture of a good estate plan wills, trusts, powers of attorney, representation, agreements, taxes. Those documents matter enormously, but they only cover part of the journey. Today, we're talking about the part that almost nobody plans for the emotional, practical and deeply human side of the end of life. Most of us plan carefully for what happens after death, and not at all for the dying itself. Families receive a life limiting diagnosis and suddenly find themselves navigating medical decisions, difficult conversations, caregiving, logistics and anticipatory grief all at once and with no roadmap. And since medical assistance in dying became legal in Canada in 2016.
Nicole Garton 00:01:17 Many families face profound decisions that previous generations never had to think through. There is an emerging profession dedicated to walking beside families through exactly this: the end of life doula. I'm delighted to be joined today by Caroline Derkson, founder of end with Care Vancouver. Caroline is a death doula, grief support practitioner, certified memorial celebrant and educator who provides heart led, non-medical support to families across the Lower Mainland. Her work spans the whole journey: clarifying wishes and facilitating family conversations after diagnosis, coordinating care, companioning for the dying person, supporting families through maid provision, designing rituals and vigils for the final days, and providing grief support after a death. She also teaches workshops that build grief literacy in workplaces, schools and communities. Caroline, welcome. It's wonderful to have you here.
Many of our listeners have heard of a birth doula, but not as many have heard of a death doula. Tell us, what is a death doula?
Caroline Derkson 00:02:21 So an end of life doula is a holistic, non-medical professional that provides support to families on the end of life journey.
Caroline Derkson 00:02:29 We have a really broad scope of practice. As you touched on in your introduction, there's a lot of different components to the work, and we can drop in at different points on the journey wherever a family is needing us to come in.
Nicole Garton 00:02:41 That's wonderful. So let's talk about what you say. It's holistic, non-medical support. How do you fit in with the palliative team, the hospice, the doctors and the nurses? How does that work?
Caroline Derkson 00:02:51 Yeah, so we can support families, whether the dying person is in hospital, hospice, a care home or dying at home. And so those relationships with the medical professionals can be really important. Their focus and their greatest strength is caring for the physical needs of the dying person. Our responsibility, then, is to care for the emotional needs of the other people in the room. In those times, the family's role is to really grieve and support their loved one, and so they're not always really capable of having those challenging conversations with a lot of medical terminology coming at them.
Caroline Derkson 00:03:26 And so we can really bridge that gap for them and distill that information down into something that is really digestible and tangible when they're ready to take it in.
Nicole Garton 00:03:35 So when do people typically reach out to you? At what stage?
Caroline Derkson 00:03:39 It varies. I will get calls from folks who have received a life limiting diagnosis. And they're really looking for that planning piece to start early. So we have a lot of runway in our relationship. I will sometimes get contacted by folks who are accessing medical assistance and dying. Sometimes we get contacted at some point. And then the relationship looks very different. But all of those are sort of opportunities for somebody to reach out. And I get contacted as often by somebody who's dying as I do by a family member. I've had client relationships where I never met the dying person at all. My role was exclusively to support the family members and their decision making and support roles.
Nicole Garton 00:04:19 So what's the biggest misconception people have about death doulas?
Caroline Derkson 00:04:23 There's two that I personally bump into. One of them is that we facilitate death by administering the medications for medical assistance in dying.
Caroline Derkson 00:04:34 That is absolutely not within our scope of practice. That is a medical practitioner scope of practice.
The other one that I run into a lot is when I speak about my work. People will often say to me, oh, that sounds so sad. And certainly there is an element of sadness, as you can imagine. But there's tenderness and there's love and there's moments of inspiration in our relationships with our clients. And so it really is sort of a full spectrum of emotion. And it's not just the sadness that people usually assume it is.
Nicole Garton 00:05:02 Well, let's talk about that because we have this Western culture where it's like a cult of youth, where we're sort of in denial about death. We've sort of sanitized death, and death is an inextricable part of life. How do you help families deal with that or try to raise awareness?
Caroline Derkson 00:05:21 Yeah, that's a really good question. And you putting the word sanitize in there is really what has happened. I've given this so much consideration. And historically, death was a community event with a medical component.
Caroline Derkson 00:05:34 And we have flipped that. We have pushed it into spaces where it is a medical event with a small human or community component. And so what that's done is it's allowed us to sterilize the experience, to hold it at arm's length, to be really fearful of it because it's somebody else's responsibility to deal with. Where historically in villages, if somebody were dying, the entire community would support the family. They would come in, they would prepare meals. They would sit with the grieving people. They would dig the hole to bury the body. You know, it was really a community event. And that holistic support is something that we have removed ourselves from because we've become so fearful of death and dying.
Nicole Garton 00:06:15 So how can we as practitioners, maybe it's not that we can necessarily change Western society or these fears, but maybe raise awareness, because I think acceptance and appreciation that it's the normal part of the life journey. Like, what kind of work are death doulas doing to improve awareness and sort of reframe this fundamental part of life?
Caroline Derkson 00:06:39 You know, we sort of take that as one of our big responsibilities is to normalize, first of all, these conversations.
Caroline Derkson 00:06:45 Let's sit down and talk about it. You can attend death cafes, grief support circles, things like that, or facilitated by professional doulas that just invite you to have these conversations. I've never met anyone that's not carrying a grief story in their heart, and that needs to be witnessed. That is the first step in integrating our grief, is to allow it to be witnessed and not to hide it and run from it. And so, yeah. Number one thing is just normalize the conversation, start to talk about it within your family. And if that feels too sensitive, which it does for a lot of families. Talk to your friends about it. Reach out to a death deal and say, I just want to start talking about this. I have some questions or some ideas or some concerns that I'd like to get out.
Nicole Garton 00:07:32 So traditionally, this role might have been served by a faith leader. And we have, you know, as we know, increasing secularization of society. So how does your role overlap, or maybe take the position of what may have been a faith based person in the past?
Caroline Derkson 00:07:53 We also work with folks that have different religious and cultural beliefs that support their transition through death and dying.
Caroline Derkson 00:08:00 And so learning about those is really important. It really guides our practice in terms of the inclusivity of it all. And when we first meet a client and we start to have those values aligned conversations and assess what their wishes are, what their beliefs are, they may hold beliefs that are rooted in religion or just rooted in a spiritual presence. Or maybe they don't have any beliefs about end of life, but they've got a lot of questions. And so our role is to really distill that down into conversations that we can have that will really guide how we support them in their belief systems.
Nicole Garton 00:08:32 Let's talk pragmatics like what do you actually do?
Caroline Derkson 00:08:36 Wow. How much time have you got? It can be a very long relationship with the family. So if we look at it right from the beginning, we're being accessed. When somebody has a life limiting diagnosis, say, let's talk about that scenario. We're going to come in, we're going to have those values aligned conversations.
Caroline Derkson 00:08:56 We're going to figure out what their wishes are for the end of life. In that process, if they have not done their financial and legal planning, we will make referrals to trusted community partners, estate planners, lawyers in order to get those things in place, because we both know how important those things are. So that planning piece of it is really important. We can have discussions about what they might want for memorial service. Do they want a living funeral, a celebration of life, a more traditional funeral, do they want to be cremated? Do they want to look at more environmentally conscious options for those things? Lots of people don't know what's available. And so having those conversations, encouraging folks to reach out to the funeral homes, that we'll be able to facilitate those rather than leaving that to their loved ones after they're gone, because that can put a tremendous amount of stress on them in those beginning stages as well. We can start to talk about if there's a legacy project that that family or that individual would like to work on, we can begin designing that and facilitating that as well.
Caroline Derkson 00:10:00 So in those early stages, it's really about gathering information. Finding out what a person's level of understanding is about where they're at in their illness, where the family is at. Begin to establish those circles of care that will surround that person, to really hold them on their journey.
Nicole Garton 00:10:19 So what's a living funeral?
Caroline Derkson 00:10:21 A living funeral is if you decide you want a living funeral, you can have your sort of celebration of life while you're alive, while you're present. And so you can be there to have those conversations and share in the laughter and the stories that people are going to tell about you, and just enjoy those last sort of social times with the people you care about.
Nicole Garton 00:10:42 Wasn't that in a Seinfeld episode? I think a gentleman attended his own funeral. Maybe. Yeah. So that's interesting. So tell me about legacy projects. Like what kind of things do people do?
Caroline Derkson 00:10:58 Yeah. So a legacy project is so personal to each individual, and it can come from two sources. It can be a dying person that wants to leave something for their family to continue to engage with and have that lasting sense of connection.
Caroline Derkson 00:11:13 And so it can be anything from maybe a cookbook of mom's treasured recipes that they want their family to continue to access. It can be storytelling. That's a big piece of it. A lot of people are very reflective as they're ending their life. It can be video recordings of stories that they want to tell, observations that they've made about life, things that they want to share with their loved ones. It can be photo albums. The other side of it is if a person has passed, the family might want to consider some kind of legacy to continue to honor the memory of their person. Maybe it's a scholarship, maybe it's a park bench dedicated to them. Maybe they start a foundation and fund projects that their loved one would have really felt passionate about.
Nicole Garton 00:11:57 So are there recognized credentials like if somebody is shopping for a death doula, what credentials or education should they look for?
Caroline Derkson 00:12:06 So at this time it is an unregulated profession in Canada, and it's something that as a community, we discuss what that might look like for us in the future.
Caroline Derkson 00:12:15 But as it stands right now, there are a number of programs in North America, a few based here in Vancouver that offer end of life doula training. So if it's important to somebody to know that their death doula has done that training, it's an easy part of that first conversation to ask what that looks like.
Nicole Garton 00:12:34 So what does that training tell me about that?
Caroline Derkson 00:12:36 I mean, it varies from one institution to another. Some of the training is very extensive. Some of it is more truncated. I mean, as you can imagine, if you get a group of people in a space that are training to become end of life doulas, there's a lot of feelings that come into it. There's a lot of discussion of the practical aspects of death as well. What is this going to look like? What is it going to sound like? What are those final months and days and weeks going to look like? Those really practical things are important for us to know. A lot of the programs will look at some of the ancient practices and beliefs around death and dying, because that can really support us in the way that we do our work as well.
Caroline Derkson 00:13:15 It's usually led by a single instructor. There's some really talented instructors in this space that are educating the rest of us, emerging end of life doulas into our practice.
Nicole Garton 00:13:26 So I know you were an educator for many years. What are some other professions that you see? Is it social workers? Is it mental health professionals like or is it medical people like? Who do you see coming into this?
Caroline Derkson 00:13:39 Yeah, that's a really good question. It's shocking the broad background that people bring to this. There's sort of almost two camps of people. There's people that come into it really fresh and new, and they're going to make this their vocation. And those young people inspire the Academy because it's a big leap to take. There's other folks that I've met who are coming from professions like nursing, and they're just looking to help patients in a different kind of way, in a more holistic way. I've met folks that work with unhoused populations, and their focus really will become supporting those people in their end of life transitions.
Caroline Derkson 00:14:16 I've met people that come from corporate backgrounds, pharmaceutical sales and all kinds of different things. It’s not just one pathway that leads you into this work. And I acknowledge how this sounds, but it's really a calling. You are called to do this work and that's how you come into it.
Nicole Garton 00:14:35 So tell me about your journey. You were a teacher for many years. What led you to this?
Caroline Derkson 00:14:40 Yeah, I've reflected on this a great deal because a lot of people ask me that. They go, it's so different, you know, it's a very different profession. And my work as an educator and school administrator was always rooted in my relationships, my relationships with my students, with their parents, with my colleagues. That was always where the greatest strength came from in my practice, was being able to have challenging conversations with people, and support people in difficult decision making. And so this skill set is really similar. It's just applied at a different phase of life. And it truly was a calling for me.
Caroline Derkson 00:15:16 I left my teaching and career, decided to give myself some time to figure out what was going to land next. And I was listening to a podcast, and somebody said that their husband was a death doula, and a light went off in my head and I was like, that's the next thing for me.
Nicole Garton 00:15:31 Is that Mel Robbins? Yes. Okay. Yeah. She's a famous podcaster and her husband's a death dealer. Oh, that's so interesting. Yeah. Yeah. So what makes a good death doula?
Caroline Derkson 00:15:43 Somebody that can listen. Somebody with good communication skills. You have to have a big heart. You have to be comfortable having difficult conversations. You must be able to accompany people in really vulnerable times.
Nicole Garton 00:15:59 That's a big ask.
Caroline Derkson 00:16:00 It is?
Nicole Garton 00:16:00 Yeah.
Caroline Derkson 00:16:02 The people that do this work are extraordinary. It inspires me every day to see my colleagues and experience the way that they approach this work.
Nicole Garton 00:16:11 So say somebody receives a life limiting diagnosis or they've got a loved one who's at end of life and they want to find a death doula to support their family.
Nicole Garton 00:16:22 Like it's so personal. And, you know, some people would be great with some families and less so, like, how do people find good death doulas and, and determine who's going to be right for them and their family?
Caroline Derkson 00:16:35 Referrals are always a really big component of that. Ask your friends, have you ever met anyone that does this work? Do you know anyone in the community that does this work? Have you worked with anybody you know that provides these services? Because if your friend has relied on somebody for this, they might be able to assess if it's a good fit or not, you can. I mean, if you really want to just take a gamble on it, do a Google search of death doulas or End of Life to view who’s working in your area. Most doulas will begin a relationship with a client with a free 30 minute consultation call. That's a really good time to assess for fit. If there's things that are very important to your family, those are the times to ask those questions.
Caroline Derkson 00:17:16 If you have young children, maybe you want to work with an end of life doula that also has young children or has experience working with young children in grief and loss. Maybe if you want to work with somebody that's in the same season of life as you. Not everybody feels comfortable working with somebody that is much older than them, or much younger than them in those vulnerable times. So really just assessing that cost is another thing. The fees vary quite a bit depending on the location of the death doula, whether the services are going to be offered virtually or in person. And yeah, sort of their level of experience. And so that might be another really important consideration for a family. But really, you'll. You'll know fairly quickly whether it's going to be a good fit or not in that conversation. And don't be afraid to ask for another referral from a death doula if that one's not a good fit for you. If I can suss out that I'm not a good fit for somebody, I'm reaching into my network and I'm saying I know someone that's going to be perfect for your family.
Caroline Derkson 00:18:16 It's not me, but I trust them to accompany you on this journey.
Nicole Garton 00:18:19 So let's talk about costs. Like what is the range of costs that people might expect anywhere between.
Caroline Derkson 00:18:26 I've seen prices listed for services anywhere between $50 and $150 an hour. It's a big range and it can fall kind of anywhere in that area.
Nicole Garton 00:18:35 Is it just hourly or do you offer packages or how does that work?
Caroline Derkson 00:18:39 Personally, I offer packages of hours as well. If it's going to be a really short relationship with a client, if it's going to be just a handful of conversations, we're going to lean into that hourly rate. If it looks like it's going to be an ongoing relationship where we're going to be working together over a series of months. There's more value in purchasing a package of hours than just sort of parsing it out over time.
Nicole Garton 00:19:00 You're at a cocktail party. You're out in the community and somebody asks you, what do you do? And you say, I'm a death doula. What kind of reaction do you get from people?
Caroline Derkson 00:19:09 Well, I spoke conditionally about how people will often say, oh, that sounds so sad.
Caroline Derkson 00:19:12 I get that, I get. That's amazing. I don't know how you do that work. The best ones are the people that say, I wish I would have had somebody like you when I lost my mother or my father. I really could have used support like what you offer.
Nicole Garton 00:19:29 So let's talk about the future of death doula. Like, say it's five years from now and the profession is thriving and people are serving families. What do you want to see? Do you want to see a regulatory body? Like do you want to see prescribed education or experience? Like what does success for the profession look like for you?
Caroline Derkson 00:19:47 I've thought about this a lot. I think it's important for there to be some level of regulation, some assessment that we can do as professionals that will get us this designation so that when clients are accessing us, they have a level of trust going into that relationship. They know that we've been accredited or they know that we've belonged to an association. So I do think that's important.
Caroline Derkson 00:20:11 And I think within that, there also needs to be the ability for us to do our work autonomously in a way that really aligns with our values and our belief systems.
Nicole Garton 00:20:21 What would you leave people with if people wanted to learn more? What would you say about how they can learn more?
Caroline Derkson 00:20:27 Reach out to an end of life tool and ask questions. There's a couple of associations that maintain websites, with lists of practitioners that are doing the work in specific cities and spaces. Look for podcasts like this one, or YouTube channels that are talking about this. And really, I mean, what I would love to see is more people with personal experience working with an end of life doula, speaking about those experiences, because I think that's the most valuable endorsement that we can get. It's families saying how supported they felt in their work with an end of life doula.
Nicole Garton 00:21:04 Caroline. Thank you. This has been one of the most human conversations we've had on this podcast. What I take from your work is this: a good end of life does not happen by accident.
Nicole Garton 00:21:14 We plan our estate so that our assets are protected, but the same intentionality belongs on the human side. The wills and trusts protect what we own the conversations, the presence and the support that people like Caroline provide. Protect the people we love at the very moment they need it most. A complete estate plan includes both. You can find Caroline and End With Care at endwithcare.com or by email: caroline@endwithcare.com.
I'll include our contact info and links in the show notes, along with our blogpost on what an end of life doula does. Caroline, thank you again for sharing your insights with us, and thank you to our listeners for joining us on your estate Matters. If you found this episode helpful, please share it with someone who. May benefit from it and join us next time for another practical conversation about estate planning, estate administration, and legacy in Canada.
This podcast is for informational purposes only and should not be considered individual, legal, financial, or tax advice. Make sure to consult the advisor of your choice to advise you on your own circumstances.
Nicole Garton 00:22:18 Thank you for joining us for this episode of Your Estate Matters. If you like this podcast, make sure to follow it on your podcast platform of choice. Whether you're planning your own estate or you're acting as executor for somebody else's heritage, trust can help partner with Heritage Trust to protect your family, your assets, and your legacy. If you'd like more information about Heritage Trust, please visit our website at Heritage Trust.
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Website - https://www.endwithcare.com/
LinkedIn - https://ca.linkedin.com/in/caroline-derksen-05828a2a9