Latest / Your Estate Matters / Episode 70 - Embracing the Human Side of Dying with Caroline Derksen
Transcript
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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 ..."><meta name="google" content="notranslate"><meta name="viewport" content="width=device-width, user-scalable=no, initial-scale=1.0, minimum-scale=1.0, maximum-scale=1.0"><meta http-equiv="X-UA-Compatible" content="IE=edge;"><meta name="fragment" content="!"><meta name="referrer" content="origin"><title>YEM Caroline Derkson Transcript - Google Docs</title><link rel="shortcut icon" href="https://ssl.gstatic.com/docs/documents/images/docs-favicon-2026-v2.ico"><link rel="chrome-webstore-item" href="https://chrome.google.com/webstore/detail/apdfllckaahabafndbhieahigkjlhalf"><script nonce="6gddY-2cMN6Ea90GGZ7v0w">_docs_webfonts_fontFaces = null; _docs_webfonts_iframe_fontFaces = null;DOCS_timing['wpid']=new Date().getTime();</script><style 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Your Estate Matters is a podcast dedicated to everything estates, including building and preserving your legacy. If it\u0027s estate related, we\u0027ll be talking about it. We\u0027re having the conversations today that will help Canadians protect their families, their assets and their legacies tomorrow. \n\nHello and welcome to Your Estate Matters. I\u0027m Nicole Garton. \n\nOn 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\u0027re 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.\n\nNicole 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\u0027m 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\u0027s wonderful to have you here. \n\nMany 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?\n\nCaroline 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.\n\nCaroline Derkson 00:02:29 We have a really broad scope of practice. As you touched on in your introduction, there\u0027s 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.\n\nNicole Garton 00:02:41 That\u0027s wonderful. So let\u0027s talk about what you say. It\u0027s holistic, non-medical support. How do you fit in with the palliative team, the hospice, the doctors and the nurses? How does that work?\n\nCaroline 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\u0027s role is to really grieve and support their loved one, and so they\u0027re not always really capable of having those challenging conversations with a lot of medical terminology coming at them.\n\nCaroline 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\u0027re ready to take it in.\n\nNicole Garton 00:03:35 So when do people typically reach out to you? At what stage?\n\nCaroline Derkson 00:03:39 It varies. I will get calls from folks who have received a life limiting diagnosis. And they\u0027re 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\u0027s dying as I do by a family member. I\u0027ve 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 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One of them is that we facilitate death by administering the medications for medical assistance in dying.\n\nCaroline Derkson 00:04:34 That is absolutely not within our scope of practice. That is a medical practitioner scope of practice. \n\nThe 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\u0027s tenderness and there\u0027s love and there\u0027s moments of inspiration in our relationships with our clients. And so it really is sort of a full spectrum of emotion. And it\u0027s not just the sadness that people usually assume it is.\n\nNicole Garton 00:05:02 Well, let\u0027s talk about that because we have this Western culture where it\u0027s like a cult of youth, where we\u0027re sort of in denial about death. We\u0027ve 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?\n\nCaroline Derkson 00:05:21 Yeah, that\u0027s a really good question. And you putting the word sanitize in there is really what has happened. I\u0027ve given this so much consideration. And historically, death was a community event with a medical component.\n\nCaroline 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\u0027s done is it\u0027s allowed us to sterilize the experience, to hold it at arm\u0027s length, to be really fearful of it because it\u0027s somebody else\u0027s 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\u0027ve become so fearful of death and dying.\n\nNicole Garton 00:06:15 So how can we as practitioners, maybe it\u0027s not that we can necessarily change Western society or these fears, but maybe raise awareness, because I think acceptance and appreciation that it\u0027s 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?\n\nCaroline 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.\n\nCaroline Derkson 00:06:45 Let\u0027s 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\u0027ve never met anyone that\u0027s 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\u0027d like to get out.\n\nNicole 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. 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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\u0027re being accessed. When somebody has a life limiting diagnosis, say, let\u0027s talk about that scenario. We\u0027re going to come in, we\u0027re going to have those values aligned conversations.\n\nCaroline Derkson 00:08:56 We\u0027re 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\u0027t know what\u0027s available. And so having those conversations, encouraging folks to reach out to the funeral homes, that we\u0027ll be able to facilitate those rather than leaving that to their loved ones after they\u0027re 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\u0027s a legacy project that that family or that individual would like to work on, we can begin designing that and facilitating that as well.\n\nCaroline Derkson 00:10:00 So in those early stages, it\u0027s really about gathering information. Finding out what a person\u0027s level of understanding is about where they\u0027re 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.\n\nNicole Garton 00:10:19 So what\u0027s a living funeral?\n\nCaroline 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\u0027re alive, while you\u0027re 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.\n\nNicole Garton 00:10:42 Wasn\u0027t that in a Seinfeld episode? I think a gentleman attended his own funeral. Maybe. Yeah. So that\u0027s interesting. So tell me about legacy projects. Like what kind of things do people do?\n\nCaroline 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.\n\nCaroline Derkson 00:11:13 And so it can be anything from maybe a cookbook of mom\u0027s treasured recipes that they want their family to continue to access. It can be storytelling. That\u0027s a big piece of it. A lot of people are very reflective as they\u0027re ending their life. It can be video recordings of stories that they want to tell, observations that they\u0027ve 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\u0027s a scholarship, maybe it\u0027s a park bench dedicated to them. 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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\u0027s a lot of feelings that come into it. There\u0027s 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.\n\nCaroline Derkson 00:13:15 It\u0027s usually led by a single instructor. There\u0027s some really talented instructors in this space that are educating the rest of us, emerging end of life doulas into our practice.\n\nNicole 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?\n\nCaroline Derkson 00:13:39 Yeah, that\u0027s a really good question. It\u0027s shocking the broad background that people bring to this. There\u0027s sort of almost two camps of people. There\u0027s people that come into it really fresh and new, and they\u0027re going to make this their vocation. And those young people inspire the Academy because it\u0027s a big leap to take. There\u0027s other folks that I\u0027ve met who are coming from professions like nursing, and they\u0027re just looking to help patients in a different kind of way, in a more holistic way. I\u0027ve met folks that work with unhoused populations, and their focus really will become supporting those people in their end of life transitions.\n\nCaroline Derkson 00:14:16 I\u0027ve 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\u0027s really a calling. You are called to do this work and that\u0027s how you come into it.\n\nNicole Garton 00:14:35 So tell me about your journey. You were a teacher for many years. What led you to this?\n\nCaroline Derkson 00:14:40 Yeah, I\u0027ve reflected on this a great deal because a lot of people ask me that. They go, it\u0027s so different, you know, it\u0027s 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\u0027s just applied at a different phase of life. And it truly was a calling for me.\n\nCaroline 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\u0027s the next thing for me.\n\nNicole Garton 00:15:31 Is that Mel Robbins? Yes. Okay. Yeah. She\u0027s a famous podcaster and her husband\u0027s a death dealer. Oh, that\u0027s so interesting. Yeah. Yeah. So what makes a good death doula?\n\nCaroline Derkson 00:15:43 Somebody that can listen. Somebody with good communication skills. You have to have a big heart. 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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\u0027s going to be right for them and their family?\n\nCaroline 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\u0027s 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\u0027s a really good time to assess for fit. 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I think it\u0027s 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\u0027ve been accredited or they know that we\u0027ve belonged to an association. So I do think that\u0027s important.\n\nCaroline 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.\n\nNicole 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?\n\nCaroline Derkson 00:20:27 Reach out to an end of life tool and ask questions. There\u0027s 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\u0027s the most valuable endorsement that we can get. It\u0027s families saying how supported they felt in their work with an end of life doula.\n\nNicole Garton 00:21:04 Caroline. Thank you. This has been one of the most human conversations we\u0027ve had on this podcast. What I take from your work is this: a good end of life does not happen by accident.\n\nNicole 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. \n\nI\u0027ll 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. \n\nThis 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.\n\nNicole 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\u0027re planning your own estate or you\u0027re acting as executor for somebody else\u0027s heritage, trust can help partner with Heritage Trust to protect your family, your assets, and your legacy. 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