End-of-Life Planning

Joeita Gupta:
This episode contains mentions of death and grief. Listener discretion is advised.
I'm Joeita Gupta, and this is The Pulse. Death is the great equalizer. We will all die someday and inevitable, though it is, death and its accompanying rituals can nevertheless come as a surprise and even a shock. For the dying person, planning for death can make the transition easier both for the person and for their friends and family. Besides this, when a person dies, there are a large number of practical tasks that need to be taken care of. Family members are usually the ones on the front lines, balancing tasks, offering support to the dying person while managing their grief and loss. But just as their support available during the birthing process, there's also professional assistance to ensure a dignified end of life. Today, we discuss the end-of-life doula. It's time to put your finger on The Pulse.
Hello and welcome to The Pulse on AMI audio. I'm Joeita Gupta, and as always, I'm joining you from the accessible media studios in downtown Toronto. I have black hair that's tied back in a ponytail, and today I'm wearing a Navy sweater, which is a bit loose-fitting. It has a V-neck and I'm wearing a black pendant. Our topic today deals with death, bereavement, and loss, and I recognize that it might be a difficult topic for some of you, especially if you've had a recent loss in the family. Often, people, myself included, struggle with death and struggle with making decisions about how to support a loved one who is dying or to even support friends and family members who've experienced a loss.
To help us make sense of some of these complicated questions, I'm joined today by Sue Phillips. Sue Phillips is the Vice President of the End of Life Doula Association of Canada. Sue, hello and welcome to The Pulse. It's great to have you on the program.

Sue Phillips:
Thank you so much. Thank you for the invitation.

Joeita Gupta:
Sue, what is an end-of-life doula?

Sue Phillips:
I want to add something to that title because it's important to recognize that end-of-life doulas also help long before the actual death is at hand, from diagnosis to death, which can often take a long time. Now I call myself a critical illness end-of-life doula.
It helps people understand that you don't have to wait until you are very close to death. We offer, first of all, education, advocacy, and empowerment. That is kind of our touchstones, if you will, of how we want to reach out to the people we support. And what that means is we offer non-medical support in a variety of ways, depending of course, on what the client needs, what the family needs, and we're there for the entire circle of care. We want to be part of the wider healthcare circle, not to replace anyone, but to be supporting a supporting member of that circle.

Joeita Gupta:
What is the difference between an end-of-life doula or a critical care end of life doula and let's say a nurse in a palliative care unit. What is it that you do that's different from what they do?

Sue Phillips:
Non-medical. Very simple. Non-medical. We do not even give someone their medication. We don't move them if someone is bedridden. That is not something that we would do. We certainly have various trainings on how to maybe physically touch someone, but that is absolutely not what we do. We're there for emotional, practical, and spiritual support.

Joeita Gupta:
Can you expand on that a little bit? When you say emotional, practical, and spiritual support, what sort of things are we talking about?

Sue Phillips:
Okay, so advanced care planning. That would be one of the first things I talk to a client about. After I ask them, do you have your legal paperwork in order? That is a big part of what people need to do. We really, really encourage people to take care of that as soon as possible because we want to help you live every moment as joyfully and without stress. So that's a big part of what I would speak with someone about first. Then I might talk about where did they understand they're at in their journey? What do they understand about their medical diagnosis, and what do they feel they need help with? So I would let them lead. Clients are leading us. You, me, we are all the experts of our own illness and death journey. We are the architects of how we need it to go.
So I would find out if their caregivers need respite, if family members need somebody to come in and sit, compassionate companioning, sitting with someone just talking, allowing them to express what they're going through, what they're feeling. Oftentimes, a client does not want to A, bother their family with their emotional experiences and definitely often do not want to bother their medical doctors. I'm that person who can sit in that space, allow that space for them to express. We do work on what is your death plan? Do you want to die at home? Do you want to die in hospice?
Who do you want with you? How do you want it to look? What kind of music do you want? Really get into helping people understand what is going to make them feel as empowered as possible. Other pieces could be working on a legacy. A legacy of... Could be an art project, a music project, storytelling like spoken word, there are all kinds of ways that we leave a legacy for our loved ones. So that's another big piece. We sit vigil when someone is in their active dying phase. So there's a real wide variety of what we can offer.

Joeita Gupta:
When someone is expecting a baby, when a woman is expecting a baby, they'll often talk you through what to expect from the delivery process. Do you also talk to people about what to expect from death and the actual physical changes that you might undergo?

Sue Phillips:
Absolutely. And that is something that people shy away from doing. We talk about... There's a lot of fear as we know. I mean, we are afraid of death, and that's because we took it away from the family. Between the funeral homes and the medical... And advances in the medical profession. Thank goodness for many of those advances.
But we've added this mystery to it. And so that can be very, very difficult. So yes, we will definitely gather resources, explain what the body will look like, what the breathing will be like, all of those things are absolutely essential to talk with people only if they ask.

Joeita Gupta:
Of course. Yeah.
But death and what comes after death is such a deeply spiritual experience. Some people think, "Well, there's nothing." Some people think there's an afterlife and somewhere you go after. How does someone's religious or cultural belief system tie into your work as an end-of-life doula?

Sue Phillips:
Again, they lead us. Is there a ritual that we can help you with? Is there a faith-based practice that I'm not aware of? You just tell me what it is you need and I'm going to do everything I can to make that happen. I'm always on a learning path. I'm currently taking a course through Centennial College called Thanatology, which is a study of death and dying and grief and bereavement. One of the units is the cultural and religious aspect of things. So we are there to help people achieve what they need around that.

Joeita Gupta:
I was talking to my husband; when he lost his father, he mentioned that after his father passed away, the family was in such a... He described it as a haze and they were trying to get a headstone for the niche. He had been cremated and they had a niche, and once they got the headstone for where the niche was they found that the name had been misspelled. My late father-in-law's name had been misspelled on the niche and they said we didn't catch it because it's so overwhelming when someone dies and you have all of these emotions and you're dealing with all of these feelings. Is one of the benefits of having an end of life doula the fact that maybe... Not to say that you don't care, but you're not emotionally invested and you're not grieving in the same way, so you would've caught that mistake.

Sue Phillips:
Absolutely. That is exactly a very good point and we are emotional. I've had a lot of people ask me. I have been involved, not very long. Three years. Since 2019. Did not have any background in the healthcare field at all. When I told people what I was going to be doing, they were shocked. Aren't you going to be too emotional for that? Because I am an emotional person. I can be.
But I find it quite different and I find the desire to create that calm atmosphere, that calm space for people, very important. It has come to me so easily and it's very interesting. I can't explain it. I call it my soul work, and I really can't explain how I'm able to not be emotional.
Again, you have to prepare. Self-care is really important. Preparing before you sit with a client, taking care of yourself, following care of a client in whatever fashion. Even when it comes to those practical things like working with a funeral home, checking paperwork, and all of that kind of thing. It can be very draining, but you have to just focus on self-care and we get through it. These people might be looking to me to create an atmosphere that is conducive to a really healthy, difficult conversation, so I have to be there for them.

Joeita Gupta:
You mentioned you don't have or didn't have a background in healthcare before this and then you make a decision to work in an end-of-life care and support. How did you make that decision?

Sue Phillips:
I still get goosebumps thinking about this and it sounds very cliché. I wasn't looking for it. It found me. I retired from a 30-year position. I worked with the public school board as administrative support and I retired, had no plans to look for a retirement job. About three years into my retirement, I was doing some volunteer work, not in the field at all, and I came across an ad for a course at Douglas College in end-of-life doula work, and I really just jumped right in.
I called an executive director of a hospice who was a close friend. I asked her opinion of end-of-life doulas and she said, "We need people. The world needs doulas." So that was all I needed to hear and I jumped right into that. I jumped right into a course at the hospice to be a visiting volunteer as well. So I was able to do both at the same time. And then I kind of hung my shingle, so to speak, right at the beginning of the pandemic.

Joeita Gupta:
That must have been tough. A lot of people dying and a lot of people dying alone, which I've heard is not a good situation. You should obviously try to have someone with you. How did you navigate the pandemic and the fact that so many people were being isolated and away from their families and going through the experience of dying?

Sue Phillips:
We definitely could not be with people in long-term care, and I have to clarify that we are private. We are a private service. We are self-regulated. We are not regulated by a governing body. We are a private service. If your family wants to use a doula that is privately out of your pocket.
We are not members or employees of long-term care homes or hospices. Even as a volunteer at hospice, we couldn't... Volunteers couldn't go in at the beginning of the pandemic for months and months. So I just thought, "Well, I guess I'll have to wait to start my support services."
But I got very lucky in that someone found my name listed with the Doula Association actually, and it was before I became a member of the board and they were quite happy to receive support virtually. And so that's how it started. I can't say I have not supported a large amount of people over the last say 18 months, but I'm not sure if I would want to be supporting a great many people.

Joeita Gupta:
One of the things that I think we should clarify is that a doula is best equipped to help when there's a terminal illness, but often death, let's say, because of an accident or if it's unforeseen, can be moreso a shock. Is there still a role for an end-of-life doula to play if the person doesn't have a terminal illness, but the family might still need support?

Sue Phillips:
Absolutely. And that is the reason that I have added illness to my name. Yeah, we need support. We need companions. We need people to go get some groceries or just give somebody some respite. There is so much to do. Just sitting at someone's bedside, talking with them when they're not well can be a tremendous help.

Joeita Gupta:
I think a lot of people wonder about what they should or shouldn't do when someone is dying. Should you be in the room with them? Should you hold their hand or should you not touch them? Should you talk to them? What makes for a good death?

Sue Phillips:
I love that you asked that because I've just have been planning a death café with a couple of friends coming up in a couple of weeks and I said, "Maybe one of our prompt questions can be, is there such a thing as a good death?" And again, that's up to the client and that is if we are lucky enough to be able to express our wishes ahead of time.
So talk about what our comfort plan is, and that includes what I want from my body, what I want in my environment, what do I want to hear, what do I want to see, what kind of music, everything, and what blanket I want on me. Do I want people to touch my feet? No. Do I want someone to touch my hand or my head? Do I want someone to bring in some energy work like Reiki or therapeutic touch, and all of those things.
If we are lucky enough and open enough to really contemplate that and document it, that is one of the most important things is to document the wishes so that empowers everybody around you. When I say to my partner, please make sure that I'm wearing those purple socks, I'm going to write that down and I'm going to for sure have those purple socks on whether I can communicate or not. The other piece is that people really need to think about identifying who is going to speak for them when they can't speak for themselves. We really need to identify that substitute decision maker, not just... We're not talking decisions high level, but also about those kinds of things. Touch, sound.

Joeita Gupta:
I remember that some of the... I remember when my grandparents died and I was quite young when that happened. You realize that it's not just when you talk about families, you're not just dealing with adults or people who are managing funeral arrangements or dealing with the legalities of someone's passing away. You're often dealing with children. What kind of support would you offer children in understanding what happens when a loved one passes away?

Sue Phillips:
It's a very good question. I myself always reach out to resources that I have who specialize in working with children in the dying process and grief and bereavement. That's another thing we took away. I mean, many, many years ago, we took care of our ill and dying in our homes, which meant that children were exposed to everything. We held funerals in our homes and children were not hidden. They understood it.
Yes, it's a difficult situation. It absolutely is difficult, but there's a lot of honour in that community of people looking after the person who is dying, including children. It's a very special niche in my opinion, and not one that I have fully embraced working directly with children, but I have many resources and people who do work specifically with children. It's a tough one.

Joeita Gupta:
It is a tough one because you never know when the right time is and what to say to children about death because they will carry those ideas into adulthood with them. You've been practicing for the last three years or so, and so along with the pandemic, the other big conversation happening in Canada is around medical assistance and dying where people are now making decisions about choosing when they die, especially if they're dealing with a terminal illness. Has the introduction made in any significant way changed the work that you do?

Sue Phillips:
Well, it's been available since 2016, so it was already kind of fully in our psyches by the time I started. Every client I've worked with or consulted with has asked me about it, wants details on it. I've only had one client who utilized it, and I supported that client for almost a year before they died utilizing assistance in dying. I mean, my personal feeling about it is that I'm glad I live in Canada where we do have the opportunity to, in what many of us believe, is to die with dignity. Yeah, so everybody asks about it.

Joeita Gupta:
Yeah, no, I mean it's certainly very topical and people want to feel like they have some control over that situation. You mentioned earlier in our conversation that end-of-life doulas are self-regulated and there isn't a government body regulating end-of-life doulas as such, but what are some of the ethical considerations that you work on the basis of?

Sue Phillips:
Well, again, we really have to be careful around the non-medical. That is absolute priority is that we are not there for that and that can be challenging sometimes. I mean, if you're sitting at bedside and somebody says, "Please move me," there can be some liability around that. So you do have to be careful with that. You have to be mindful of culture and religion as we talked about. You have to be very mindful of that. You have to embrace and welcome diversity, you have to be non-judgmental in every meaning of that word. So you can't be pressing your own beliefs.
For instance, I would never ask someone if they wanted to die with medical assistance. I may ask them, do they know about it? Are they interested in getting some information about it? But I don't necessarily talk about my personal feelings about that.

Joeita Gupta:
We only have about a minute left. If someone wanted to contact you or if they wanted to utilize an end-of-life doula, how do they go about doing that?

Sue Phillips:
Well, I'm happy to. I'm thrilled to promote our association. I'm really glad that you reached out to us. We were formed in 2016, so we're still in our infancy. We started with 30 people and two founders, and we now have close to 500 people. Five hundred doulas working at various levels of their journey, whether they're already supporting people, or perhaps they're still in their learning.
But yes, we have about 500 people across Canada and our website, the EndofLifeDoulaAssociationofCanada.org, has a listing of available end-of-life doulas in each province. These are people who are registered and who have started their services. So I'm thrilled to be a part of the growth of this wonderful organization, this community of end-of-life doula professionals. There is also a death Doula Ontario Network, so people can go online and find a doula through that network as well.

Joeita Gupta:
Sue, it's such an important conversation and you do such important work for families when they are dealing with a difficult moment. Thank you so much for sharing a little bit of what you do with us today and for being on the program.

Sue Phillips:
Thank you so much for inviting me.

Joeita Gupta:
Sue Phillips is the Vice President of the End of Life Doula Association of Canada. I hope you found this conversation informative. If you have any feedback, we would love to hear from you. You can always leave comments down below if you're listening on YouTube or if you've joined us using one of the podcast streaming platforms. Again, please leave your comments down below. Don't forget to subscribe. We put out videos every week. We put out these podcasts every week, so it's a great way to get future content delivered right to you.
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Our videographer today has been Ted Cooper. Marc Aflalo is our technical producer. Ryan Delehanty is the coordinator for podcasts at AMI-audio. And Andy Frank is manager of AMI-audio here at Accessible Media Inc. On behalf of the team, I've been your host, Joeita Gupta. Thanks for listening.