What I’ve Learned About Life From Working With The Dying

Kayla Moryoussef is a Toronto-based community worker & registered social service worker who has been volunteering and working in end-of-life care for over seven years. She is a death educator, death doula candidate with Home Hospice Association, and project manager for all of their Death Cafés across southern Ontario. 

We were curious about why she was drawn to death work, and what she’s learned about life from those who are on their deathbeds.

SDTC: Tell us about how you got started in death work.

KM: I was working in the music industry, but I knew I wanted to be in the care-giving profession. I was looking for opportunities, and I found a hospice in Toronto who would give me forty hours of training and then put me in the field with dying people. I was like, “Sign me up!” I did the training with Hospice Toronto, then I became an in-home palliative care team volunteer member. I started to match with clients, going into homes and offering respite to family caregivers, and my first client was an overnight client. The wife would go to sleep, and I would stay overnight with him.

There are basically three choices when people are dying: they can die in a residential hospice, at home, or in a hospital. I focused on people who want to die at home. I would go into the homes and offer family members respite and give them a break and sit with the dying person. Then I went back to school to become a social service worker/community worker, with a focus on palliative care.

You’re also training to become a death doula. What does that entail exactly? 

The death doula supports the dying person primarily, then the loved ones. There are three things that a death doula does: the first is sit vigil, so literally sit with the dying person and offer respite to their caregivers. The second is death planning (who, what, where, when, why, smell, sight, taste, sound) of when they’re actively dying. The other piece is legacy work: what do you want to leave behind, and how can I help you with that?

There’s training in advanced planning, legal matters, home funerals, green funerals, how to keep a body cold so you can keep it in the home for the family to be with the body, all of those things. After that, we have to write an exam, bear witness (be with a dying person), meet with a local integrative palliative care team and teach them what a death doula is and learn what their roles are, write an exam, then we become fully fledged death doulas.

There’s caregiving, then there’s caregiving with dying people. That’s a bridge a lot of people don’t like to get near, let alone cross. What drew you to this?

I think it’s a couple of things. I think everyone is built for something. When I found this, it just made sense to me. This is what I’m built for. I actually find it really empowering. I don’t leave feeling drained or depressed; I leave feeling like I’m in on this secret. 

I lost, essentially, a parent when I was fifteen. It was a great loss, but I found beauty in her death. I was an integral part of the dying process and that was my introduction to being a death doula. The role came to me. It made sense for me. There are lots of things I can’t do, and this is something I can do.

What is it like to bear witness?

I feel so privileged. Who am I to be invited into the homes of these people at such a vulnerable and intimate time? It feels like a gift.

What have you learned?

I’ve learned that death can be beautiful. When you deal with death and dying, it’s not about that; it’s about life and living. Until someone is dead, they’re still very much alive. I’m not working with dying people, I’m working with living people. I’ve learned about life. I’ve learned what matters to me in life, because I’ve learned what matters to people on their deathbed. What matters to people on their deathbed are their relationships. The common regrets are, I wish I had loved harder, I wish I hadn’t worked so hard, I wish I’d done more of the thing that makes me happy, I wish I’d spent more time on my relationships. I get to live my life with those values in mind. I don’t have to wait until I’m on my deathbed to think of those values. I feel like I’m in on this secret, but everyone can know. It’s not just mine to know.

I’ve really learned the gift of silence. I’m a really chatty person. I was never really good at silence. And in sitting with dying people, one of the greatest gifts you can give them is silence. Just sit there quietly and hold space for them. I give them the opportunity to say what they need in time and not push them to talk. That was a hard thing for me to do. You kind of want to push people to talk because you think that’s what they want to do. But that’s not necessarily the case.

What qualities do you need to do this work?

Compassion. Openness. Vulnerability. Patience. A willingness for fearlessness; because once you face death, you realize it’s not scary. It’s just a natural part of life. I think it requires a leap of faith to say, “This won’t be so scary if I’m willing to take this on.” From my experience, it isn’t so scary. It’s a willingness to be human.

How can we better equip ourselves to face a loved one’s death?

That’s challenging. That preparation does need to happen, but not necessarily with the dying person. Liaising between families and acting as kind of a translator so these conversations can happen is really important, because denial is really destructive.

Often the person who is dying wants to talk about it, and the family members don’t. It’s the family members who want to maintain denial. The person who is dying accepts and acknowledges it and wants to discuss it. A death doula will act as a conduit for that conversation to happen. When you acknowledge that it’s happening, that’s when you can move forward with it. One of the really beautiful things that can happen when you acknowledge somebody is dying is that you can grieve together. Often the dying person wants to grieve. You can grieve the loss together while the person is alive.

Have you noticed a shift in people’s willingness to talk about death?

I think younger generations are becoming a bit more fearless. The death-positive movement is happening, and it’s going to have to happen because we’re facing a boomer crisis. We’re going to have a massive boom in the population in the number of people who are dying and also a boom in the number of people who are taking on caregiving roles for dying people. We’re going to have to be talking about it, because our system is not equipped to deal with the number of dying people it is going to be hit with. So the shift has to happen. I think it is happening, because what we’ve been doing hasn’t been working for us. It is the last taboo, and I think we’re starting to recognize that. 

I host Death Cafes, and I think the most powerful thing that can happen is conversations about dying and death before we’re faced with death. The dialogue needs to be happening not when we’re faced with it and we’re feeling vulnerable and emotional, but when we’re having casual conversations about our mortality, because we’re faced with it every day.

Has doing this work changed how you look at your own mortality?

I think so, in that I don’t really think about it. It’s changed how I live my life. I live my life in a way that if I were to die tomorrow, I don’t think I would have regrets, because I think about my life in terms of my deathbed. I’m not afraid to think of my life in terms of, Will this matter to me on my deathbed? If it won’t matter, I’m not going to make a fuss of it today, and if it will matter, then that’s how I’m going to live today. It’s really empowered me.

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