An end-of-life doula is much like a birth doula, except instead of preparing people for birth, they prepare for the tabooed process of death.
“We provide more continuity of care throughout all stages of diagnosis, palliative care right up to the final days and even after,” said Talitha Moores. “Many other people you might end up involved with will only be with you for certain periods, and you have to get to a certain place in your healthcare journey before you would have somebody from hospice working with you.”
Doulas are available to help anyone who wants to prepare for end-of-life. She encouraged people to start preparing at a stage of life before a terminal diagnosis forces people to make decisions.
“When you are in that situation, it is so emotional,” said Moores. “It is so raw, not just for you but other people, so it’s harder to have those conversations. As a doula, we also like to be involved with everybody.”
She has been a personal support worker (PSW) since she was 18 or a nurse’s aid.
“I’m aging myself – I’ve been a PSW since before there were PSWs, and I’ve always found that dealing with end of life was where I felt like I could help the most,” said Moores. “But as a PSW, you should focus on the client and only on the client. We’re very restricted in what contact we can have with other people, whereas a doula wants to involve the person’s whole family, friends, their community.”
She said she encourages anyone over 18 to start thinking about their advanced care plans.
“What you would want to happen in different situations and get some of that paperwork done,” said Moores. “Have those conversations because it’s one thing to choose a power of attorney and decide that person is going to speak up if you can’t speak up for yourself, but, if that substitute decision-maker doesn’t know what you would want, then they can’t make those decisions.”
She said the conversations should be more in-depth than just having a Do Not Resuscitate (DNR) form.
“Those situations don’t cover everything, so it’s important to have more in-depth conversations where they understand your thinking and why you would decide certain things in different situations,” she said. “So if a situation comes up that you might not have discussed, they could still feel at ease knowing your decision. You don’t want to place a lot of extra pressure on them to make those decisions because that’s a really scary thing to have to do.”
She noted that these could be hard conversations for everyone involved.
“Many people have a hard time hearing that their loved ones are at a place where they may not want everything done, especially if they feel differently,” said Moores. “Like if your spouse wants every possible healthcare measure no matter what the doctors have said – it might be hard for you guys to hear each other.”
A doula facilitates those tough conversations.
Moores noted that she has limited experience with these conversations because COVID hit after she completed her training when she was going to wind down her work as a PSW.
“I was at a place with my PSW clients, one of them was leaving and going into a retirement home, and the other one was at a place where she thought she didn’t need a PSW all the time,” she said. “It seemed like the perfect time to do this training and start the doula business, then COVID hit. My client decided she didn’t want to be in a retirement home, and the other one decided with all the stress and changes she wanted to continue having a PSW.”
Currently, end-of-life doula is not a regulated profession, so the training varies from course to course. Some are available online, many of which are from the United States.
“I wasn’t interested in that,” said Moores. “I wanted something Canadian because our laws are different. You need to be careful if you are doing an online program that it is Canadian-based.”
She described it as a “very new old profession.”
“It’s a very old profession, and back in the day, midwives would be covering both ends of the spectrum and in between,” she said. “But as death became more clinical, more hospital oriented, just like birth, we lost all of that, and we lost our dying to the doctors to handle. It’s been a little slower for people to take death back into the home and realize that they want other options.”
Moores completed her training through Douglas College in British Columbia.
“So my certificate came from Douglas College even though I went to Fanshawe to do the training from a nurse who lives in Ontario,” she said.
She preferred in-person learning to online classes, and the course covered everything she hoped it would.
“I would encourage others to get a little more of the physical and biological training than what it gives.,” said Moores. “But because as a PSW, I already have that. Even if you can’t provide that service, I think it is good to know more. Whereas they just touch on that. Their training was geared towards … a lot of the spiritual, emotional, mental health, whereas if you go to PSW training, you don’t get any of that.”
She believes the more you understand and can face, the less fear there is, and you can live a more wholesome life.
“One of the areas that I found very interesting was the grief work, and that’s been something that I think we also need a lot more work on,” said Moores. “People don’t acknowledge what grief is. That’s one of the areas that I’ve been trying to work on and educate people on more because many people think of grief as that sadness that you have when somebody passes.”
She said grief is the feeling when there is change or loss, so if something happens, such as the loss of the ability to drive due to age, illness or injury, that is a huge loss that would cause grief.
“You have lost that independence and that feeling that people don’t want to talk about, don’t know how to name – that feeling is grief,” said Moores. “When you or a loved one is diagnosed with an illness that will take them from you, the grief doesn’t start when that person passes. The grief starts when you get that news, but we don’t face that.”
She said that grief that is not dealt with becomes a wall that stops people from experiencing and enjoying time together in those final years, months, weeks or days.
“The more we can talk about grief, about death, the more we can experience life,” said Moores. “Life isn’t the opposite of death. Death is part of life. Death is the opposite of birth.”
She has photos of her grandmother when she passed, and they even took a lot of pictures after death.
“That’s another thing I want to see more of,” she said. “When my grandfather passed quite a few years ago, we kept him home for two days to give the family all time to come and see him in his bed. He passed away at home.”
She comes from a family that has produced many nurses, her grandmother, mother, and aunt, so Moores said they are very open about death.
“That is something most people wouldn’t even know is an option, that if you have a palliative person in your life and they pass away at home, you don’t have to call the mortuary to come to take them right away,” she said. “You are allowed to do the care if that is something that would make you feel better and help you work through your grief. For us, that is something that we wanted to do. When my Oma passed, we were in the middle of COVID, so it was a little harder, but we still were able to have a lot of us there with her taking turns in the room with her. My aunt and I could still do her final cleaning, her final dressing, so we spent quite a bit of time with her.”
As a doula, Moores is “trying to advocate that death can be beautiful and it can be a very loving experience.”
“My family was part of what made me want to do more,” she said. “In my work, I have had some really beautiful deaths and some awful deaths. Then, in my own family, having those really good deaths. I mean, yes, I would love for my Oma still to be here, but she got most of what she wanted with her death. Not everything but most of it, and that’s what as a doula we want people to have the opportunity to know what they want and then be able to provide as much of that as possible.”
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