We need to talk about death
This article is part of our special series on Flesh
Millie Arora and Tamara Moellenberg of ReD Associates sit down with Lauren Carroll and Erin Merelli of Deathwives, a death-care collective that offers a range of educational programs and initiatives aimed at widening the narrative around death and dying toward a model of more empowered, community-based care. They discuss desanitising the conversation around death, planning for the end, and why confronting mortality makes for better living.
Tamara Moellenberg: To get started, what’s the origin of Deathwives?
Lauren Carroll: I’m going to try to give you the short version of a very long story. My uncle was killed in a car accident when I was 13 and I didn’t have a place to put my grief. So, instead, I became afraid of death: I’d see a hearse and I’d do the sign of the cross; I’d go past a cemetery and hold my breath. I like sharing the story because look at what I do now. I came to realise that when we have these conversations around death, when we are around death itself, it’s not death that’s scary at all, it’s that grief part. After years working in funeral homes – to really cut the long story short – I decided I wanted to teach people about home funerals and family-led death care because that was the right way to do it. During that time I met Erin Merelli. I’ll pass it over to you now, Erin.
Erin Merelli: My short version of my origin story to death work is that my first boyfriend died in a car accident when we were in high school. I loved him very much so I grieved it very hard but I didn’t live in a world that had any space or support for that. We don’t grow up thinking about death and dying. It left me feeling really isolated and I feel like I tucked that into my back pocket as I continued with my college career and became a mom. I always felt like I didn’t know how to define what I was here to do, but I knew it had something to do with helping people get through that in a better way. I saw that we needed to help people and we can’t help them if we’re not willing to have these conversations. I started volunteering for a hospice so that I could learn more and Lauren and I started offering classes on the side about death and dying. This is a topic that’s for everyone because we’re all going to die and it’s a topic for everyone who loves someone who is going to die.
Tamara: In our work with different organisations and different industries, we have really seen that, to your point, death is part of everyone’s experience and is very present in many decisions. Healthcare being one, but also in our research with customers, we’ve seen that death is so present in these decisions around wealth management, insurance, and planning for retirement. In these contexts, particularly in Western cultures, conversations around death can be very sanitised, medicalised even?
Lauren: I think the medicalisation part has been the biggest deterrent for most people because once it goes to medical professionals, they see them as the authority and do whatever they say. If they’re not well informed at the end of life, they’re going to be told the choices they have and what to do. That freedom is taken away because it has been put into a department that’s not theirs – it belongs to the doctors, the funeral home. Death has become very isolated when we turn it into a medical event. If people don’t know about their rights and choices, they don’t know what a death toll is, they don’t know what a home funeral is. And so education and public speaking – this is the best thing that we can do to empower people.
Millie Arora: Picking up on this piece of education, how have you started approaching building that awareness, that education even before it happens to people?
Erin: My answer would be: be perceptive of who your audience is and then customise your approach to that audience. Death is such a wide topic – what part of this conversation are they going to accept? And then we can start talking about all of it because there is so much to talk about. I think that just the cold hard fact that ten out of ten people are going to die should be motivating. We plan every other important aspect of life from a baby coming into the family, weddings, kids going off to college, buying houses, parties, all of these ceremonies, rituals, and modern day rites of passage. Death is the final one. It’s the only one on that list that is guaranteed for every single person. And there are practical aspects around this, too. I cannot tell you how many people have been crying at our feet after the loss of somebody that they love because they they didn’t realise how much this was all going to cost, they didn’t realise what it was going to take to close accounts, they didn’t realise things were going to end up in probate because things hadn’t been arranged properly ahead of time. And these are just such insults to the original injury of their grief. So we want people to know ahead of time.
“We plan every other important aspect of life from a baby coming into the family, weddings, kids going off to college, buying houses, parties, all of these ceremonies, rituals, and modern day rites of passage. Death is the final one. It’s the only one on that list that is guaranteed for every single person.”
Tamara: Let’s say I was a wealth manager or somebody who is trying to help my client make some decisions about their estate, what I’m hearing from you is that one way to start to broach this heavy topic of death is to share your own experience or choices other people have made that feel very concrete. Does that sound right?
Lauren: Yes. When somebody dies, we kind of go hush hush or say things like, I’m so sorry for your loss or feel we shouldn’t talk about that person again because it’ll be too sad. But the truth of it is that those people who have lost someone are always going to want to talk about their person because that’s how they show love. It’s like you’re remembering them.
“That is the ultimate reason people should care: it is because our time is the most valuable thing that we have and the ways that we spend it really, really matter. And let’s be intentional about that.”
Tamara: I wonder if there’s something also here in just the matter of factness with which you two approach this topic. There’s so much fear about just stating it. Death is death.
Erin: I think it’s generally a true statement that people are afraid of what they are not familiar with. Any time that we see people being afraid of another group of people, I think that’s rooted in not understanding what’s unfamiliar. I feel like it’s the same thing with death. We don’t see it. We don’t really understand it. We don’t know how it happens physically to the body. It’s shrouded in mystery, both right before it happens and after it happens.
Lauren: Death is the norm. Death will happen to everyone. So I think once you realise that, you can enjoy what you have. I think that switching it around has really helped me. Yeah, death is going to happen, but I’m not dead, I’m alive. And living is really great, but you know that you could die at any moment.
Erin: That is the ultimate lesson that death teaches us. That is the ultimate reason people should care: it is because our time is the most valuable thing that we have and the ways that we spend it really, really matter. And let’s be intentional about that.
Millie: I’m curious about your reflections on changes that are happening in our healthcare system: for example people being more cognisant of home health and of caring for the elderly domestically, as opposed to in nursing homes. Do you see this having implications for corporations in the healthcare space and hospital systems and so on?
Erin: We talk a lot about supply and demand in business. I think there needs to be a demand for the supply to change. I think that it’s people saying we don’t like the way that this system is happening because it’s costing us a lot of money and we don’t have a lot of choice. So how can we do that differently? We’re seeing people come up to us after the fact, after a loved one has died and they’re taking our classes and they’re learning about how many choices and options they had that they didn’t know that they had.
Lauren: The problem is that our medical system is still so focussed on saving the person no matter what. They see the future, they don’t see the present, they don’t see the person in front of them, and they’re constantly giving hope. When we have this death denial culture, which we very much do, we’re trying to keep people alive as long as we can with whatever measures are available.
Millie: How much do you think that conversation needs to happen at the system level versus individuals demanding a different kind of care and journey?
Erin: That would be ideal. That would be so much easier than us shouting from the streets. I will say we have a large percentage of people who come to our programs from a classical medical background. We have a lot of nurses. We’ve had a handful of doctors and social workers. So there are definitely people who are in the system who are like, “Oh, that’s what we need” and they’re reaching outside and they’re bringing us in. We’ve talked to a number of people in positions to make change. So I do think that there’s progress and conversations happening.
Tamara: What are the negative consequences for the patient and for the family when we don’t accept death and build time in for death to happen in the way that they want it to happen?
Lauren: I would start off by saying usually when they’re that close to death, they’re not having conversations, they’re not conscious, or cognitive. So the family misses out on that opportunity to have the conversation, to tell them how grateful they are, how much they love them. Of course you can say that when they’re dying, but what a benefit to be able to have a going away party or bring them their favourite meals or something like that before you’re in that active dying stage. Because once you’re in that active dying stage, they’re on their journey.
Erin: I’d say giving yourself time to hire a death doula or somebody who can guide you through this process gives you so many opportunities that you will not otherwise have. Because it does require us to say, okay, death is coming. That’s scary. What is my “bucket list” between now and then? When I say bucket list, it doesn’t need to mean jumping out of aeroplanes or going to France. It means who do I need to apologise to? What finances do I need to get in order? Do I know what my estate looks like? Am I right with God? What do I want my funeral to look like? A good death doula really focuses on legacy work.
“When I say bucket list, it doesn’t need to mean jumping out of aeroplanes or going to France. It means who do I need to apologise to? What finances do I need to get in order? Do I know what my estate looks like?”
Lauren: You hear the term a good death a lot. We talk about that and you cannot change the way somebody is dying. Different diseases have different dying processes. But what you can do is what Erin said, clear up all the space, make sure you’ve made all those amends so that when you die, you’re dying in peace. When your body goes through the dying process I think people kind of have checked out already. But if you can free up space for you just to be present, that’s what makes a good death.
This article is part of our special series on Flesh