Caregivers Out Loud
How do you begin the difficult dialogue around end-of-life wishes for your care recipient?
When you are the caregiver for someone whose health is declining, the reality of death can be overshadowing and feel frightening to acknowledge. So often, it’s as though we fear that simply speaking about death will speed it to our door. Karla Kerr, a funeral director and death doula in Victoria, BC, sees things differently. She approaches conversations with families who are facing or have just experienced death in an exploratory and compassionate way that recognizes death is inevitable.
Respecting and upholding the wishes of care recipients can only be accomplished through practical, values-centred communication. Death has a tendency to reveal to us what is most important; engaging in these conversations can have a tremendous impact on the depth and intensity of our relationships, especially when we prioritize them when we still have plenty of time, rather than waiting until the end.
Discover how Karla’s experiences with hundreds of families at this pivotal moment can inform your own conversations with your care recipient:
- The importance of acknowledging the inevitability of death and having reverence for the death process
- Why it is so beneficial to talk about what is most meaningful before the final moments
- The hard questions that will ensure you can take action with deference to their values and beliefs
- The positive impact of gratitude at every stage of our relationships
Follow and Subscribe to Listen
Quotes
- “When we have the gift of time and when we’re meeting to make arrangements, then it’s coming from the practical place of what are your values in life? What makes life worth living? What do you want more of? What would you like to avoid? And frankly, what would you consider worse than death? How can we document this? And what goes further than the document, which I think is just as important if not more, is how do you then communicate this with the people who need to know.”
- “This is the kind of detail I like to bring out with people because not only does that inform their care, but it also helps family members or friends know how to provide care or how to provide comfort. I love getting families talking about end of life with each other in an empowered way.”
- “You always hear, “Oh death brings out the worst in people.” Sometimes it does, but it more often than not, it really brings out the best. This is one of those very few and very real life events where what matters becomes crystal clear and urgent.”
Resources
- Learn more about Karla Kerr, End of Life Planning and Care: https://karlakerr.ca/
- A Caregiver’s Guide: A Handbook About End-of-Life Care: https://www.virtualhospice.ca/Assets/CHPCA%20caregivers_guide_2015_en_20170314094930.pdf
- After Death Checklist from Government of BC: https://www.familycaregiversbc.ca/wp-content/uploads/2021/03/After-Death-Checklist-Government-of-BC-1.pdf
- Proactively Planning for End-of-Life Blog: https://www.familycaregiversbc.ca/archives/19280
- Canadian Hospice Palliative Care Association: https://www.chpca.ca/
- Canadian Virtual Hospice: https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Support/Support.aspx
- Family Caregivers of BC Caregiver Support Line – 1-877-520-3267 (Monday through Friday 8:30am to 4pm PT)
Connect With Us!
- To read a full transcript of each episode, visit the Family Caregivers of BC website https://www.familycaregiversbc.ca/podcast
- Visit us in person at #6 – 3318 Oak Street, Victoria, BC, V8X 1R1. Hours are Monday through Friday, 8:30 am to 4:00 pm
- Telephone: (250) 384-0408
- Toll-Free Line Within BC: 1-877-520-3267
- Email: info@familycaregiversbc.ca
Follow us on Social Media
Thank You
- BC Ministry of Health- Patients as Partners Initiative
- Organized Sound Productions
Transcript
[MUSIC IN // INTRO]
VOICE-OVER: You’re listening to “Caregivers Out Loud”, powered by Family Caregivers of British Columbia and hosted by Bill Israel.
[MUSIC DEVELOPS]
BILL: As a caregiver, how do you know your care recipient’s end of life wishes?
In the caregiving process, we go through many stages of emotions. And when we are near the process of death and dying with our care recipient, we’re not always prepared for what’s approaching.
How do you uphold end of life wishes and know what to do?
Imagine being empowered after having discussions with your care recipient to move forward together in a personalized, value-centric way.
In our society where it’s the norm to feel awkward and uncomfortable talking about death, our guest Karla Kerr approaches end of life planning in an exploratory and compassionate way. Karla, a Funeral Director and Death Doula serving Victoria, BC and surrounding areas, shares that death is the only guarantee in life, yet we talk about and plan for it the least.
In this episode, we explore the importance of having reverence for the death process, being able to acknowledge death, and addressing the important actions to take when you have the gift of time.
[MUSIC OUT]
Death can feel scary, unpredictable, and overwhelming, for everyone involved. So as a caregiver, having a Death Doula by your side can lessen that anxiety about care wishes or that your care recipient will be left without adequate support. A Death Doula is able to bridge the gap between life and death by encouraging thoughtful and pragmatic discussions and planning.
I asked Karla if there was something in her family history or in her personal experience that brought her to this work.
KARLA: I was led into death care through funeral service. Growing up here on Vancouver Island, I had little experience with death. But when I was in middle school, a girl at my school died at 13. And this awoke a calling in me. I realized that I had no idea what happens after a body dies, what happens to the body, what happens to the family. I just needed to know more, and I wanted help. I was only 14 or 15 at the time, but I felt this strong urge to help.
In my twenties I was living in small town Alberta, and I was apprenticing as a funeral director. It was there that I really learned the value of community. What really stood out to me was how people knew what to do when a death occurred. The community really stepped in and filled the gaps.
When I returned to Victoria, I noticed a stark difference in terms of how we do death care here and that there seems to be a real disconnect with how we handle the dead. Here in Victoria, our cremation rate is in the high nineties, which is the highest in Canada, compared to burial. With cremation, there often isn’t a whole lot of engagement, ritual, involvement with the dead body prior to cremation. There is a lot, tends to be a lot more burial in, especially as we move further east in Canada.
But one thing about witnessing a body going in the ground is, it is a very sobering and very kind of like a primal thing, like to watch a body go in the ground. You can’t deny the death like you can with cremation.
And with the small towns, too, where you’re in a place where your ancestors or your, you know, your background, your parents, your grandparents, their bones are in the ground, too. Generally, small towns, you know, through generations are in the same small town.
Coming back to Victoria, one thing I started to feel different in terms of the role of funeral director was that I was seen as kind of just a means to an end in terms of disposing of the body as quickly and efficiently as possible. There wasn’t that ceremony and reverence that I experienced as part of a tight knit community.
BILL: As you speak, I’m thinking about our disconnect with the earth and the bodies that we are returning to the earth, except when they get burned and now there is no body. So, talk a little bit about how then you begin the conversation with these people who, even though they approach you as kind of another step in a kind of a mechanical process, you knowing that they are suffering in some significant ways that aren’t being addressed by, I guess, the funeral process, for lack of a better term.
KARLA: Well, I guess that’s why I decided to pursue becoming a Death Doula. I saw these gaps that I felt I wanted to serve in a bit of a more holistic way. And through getting a little bit of training in holistic death care, I think it’s made me a better funeral director. I slowed down. I definitely take a minute to meet the family where they’re at. You know, how are they coming to me? Have they just come from the hospital? Has this person just died? And they’re arriving to me really kind of in shock and are numb? Or have they had some time to come to terms with this? Maybe wishes are already known, and they’re coming to execute wishes that they know their person wanted, or maybe they’re kind of coming, having never planned a funeral before, and maybe also a little bit hesitant.
This is what I see a lot is hesitation of whether there’s been a bad experience with a funeral home before, or maybe a bad experience with the death. And they’re coming in to me very defensive and with their guard up, not wanting to be taken advantage of or aware that they have a foggy brain. They don’t want to, the fear of spending too much money or making decisions that haven’t been thought through.
And, I mean, if you’re coming, if you’re making plans ahead of time, the best time to talk about end of life care and end of life, like death care, is when people are, well, there’s such a stigma about talking about death like it’s going to make it happen. And if you’re talking about death when you have a terminal illness, or you’re, say, an adult child talking to your parent with an illness, and you’re wanting to ask questions about what the heck am I gonna do when you die, or how do you want, you know, at what point do we maybe stop the life sustaining measures and allow for a natural death? Like, this is a hugely hard thing to bring up when somebody is ill, because it feels like giving up.
[MUSIC IN]
BILL: When someone is healthy, or at the onset of health changes, talking about end of life preferences can feel less daunting or emotional than waiting until things progress when end of life is immediate. It provides time and space for conversations, and planning for the future.
Death is personal. It’s not an event that just happens, but rather a process to reveal what’s most important. When that conversation starts, there are intimate reasons for a person’s end of life wishes. These decisions get entangled through their unique individual circumstances around things like family, finances, values and beliefs.
I asked Karla how this very intimate work impacted her personally.
[MUSIC FADES]
KARLA: When I first had kids, I was kind of, like, haunted by, obviously, the thought of, I think I probably speak to all parents out there, the thought of something bad happening, an injury or worse happening to my child, or even to myself, thinking about my own mortality and being aware that my kids need me. I’m no longer a single person out there in the world.
I spoke to a female funeral director about this at one point, and she said, this is so normal. She struggled with it, too, and she said, the only thing you can do is have a gratitude practice and be grateful for what you have every day. I’m aware of, like, when I have those moments of worrying about my kids, I just think how grateful I am, how much I love them. And that might seem kind of simplistic, or it might seem like I’m just putting a rosy spin on things. But, with practice, this has helped greatly for me in terms of, it extends beyond just the kids. It extends to saying, I love you more. Making sure that arguments are ideally not unfinished. Have you heard the term Memento mori?
BILL: Yes, I have heard the term, yeah.
KARLA: Okay, so it’s the latin term. It means, remember, you must die.
BILL: The reality is that we are in such death denial and so frequently, that it is a matter of doing something very simple to make that reminder, I am mortal. I’m going to die. My children will die. My parents are going to die. So do you utilize that in the work you are doing with people who come and maybe filled with fear or grief about this process for putting this loved one away?
KARLA: Yeah. I think what informs everything I do, whether it’s talking with someone before. Well, before death, and we’re just planning, or whether it’s meeting with the family immediately following the death of a loved one. What I’m big about is normalizing what’s going on and providing information and options.
So when I sit with a family immediately following death, it’s checking in, and then it’s, here’s what’s going to happen, here’s why you’re, here’s what we need to do and why. And here’s where there’s opportunities to slow down and engage and have choice. When we have the gift of time and we’re meeting to make arrangements, then it’s coming from the practical place of, what are your values in life? What makes life worth living? What do you want more of? What would you like to avoid? And frankly, what would you consider worse than death? How can we document this? And what goes further than the document, which I think is just as important, if not more, is how do you then communicate this with the people who need to know?
[MUSIC IN]
BILL: Karla brings up so many great questions. They help us to move away from our own caregiving fear and grief, to focus on creating a safe and dignified death care plan. When resources for preparing and planning for end of life are available, it eases stress and tension at a time when there can be a struggle with acceptance and peace.
As a first step in figuring out how to answer some of these questions, Karla brought up the Representation Agreement, an essential legal planning document for health care matters. How can someone be empowered with practical end-of-life planning with this document?
[MUSIC ENDS]
KARLA: So if you don’t want say your spouse to speak for you, not because you don’t trust them, but because you just think it would probably not emotionally be the best person to be making decisions for your healthcare, especially if those decisions might involve avoiding some life support or ceasing life support at a certain time. Is your spouse the best person to advocate for that? And it’s okay if the answer is no.
BILL: I remember in our conversation you had mentioned something about Go Wish Cards. Can you say some more about what that is in this process?
KARLA: Absolutely. So the Go Wish Cards are my favorite tool. They are a deck of 36 cards, just like playing cards. But each card has a different statement on it. And to begin using these, you need to put yourself a little bit in the mindset of, I am in a hospital bed and I can’t speak for myself. And now these cards, the statements on these cards are going to reflect my wishes and what we’re doing is supporting them in importance. Is the statement on this card very important to you? Is it somewhat important or is it not important at all?
And so some examples of these cards would be like, to be kept informed of my prognosis with honesty. That is something that’s important to me. But some people might feel, you know what, just give me the good news so that I can stay positive. I don’t want to hear the negative stuff.
Another card is like, I want to have human touch again. That can be something that’s hugely comforting to someone. Another person may say, absolutely not. That would be really annoying to me if I couldn’t speak for myself and somebody’s, you know, rubbing my arm constantly or my feet. I love foot rubs. Give me a foot rub. That’s going to be comfortable for me. Some people hate having their feet touched. This is the kind of detail I like to bring out with people, because not only does that inform their care, but it also helps family members or friends know how to provide care or how to provide comfort.
I have found them to be effective with people of all ages, and it’s very approachable. And what I’ve actually started to do is I’ll often be, um, and this is my favourite thing. I love getting families talking about end of life with each other in an empowered way.
So when I’m invited to with the family together, we might be having this conversation because dad just had a pacemaker put in. And although he’s healthy and everything’s okay now, the adult children are like, we got to start talking about mom and dad. Like, we’re going to be on the hook for making decisions, and all of a sudden, it’s real. So we sit down at the dining room table, and I give a deck of these go wish cards to everyone. So we might have six people at the table. Everybody’s got their own deck. And at the same time, individually, personally, everyone goes through and sorts their deck into the statement is important, somewhat important, or not important at all. And after everyone has sorted their cards one by one, they go around and show what are the cards that came up as most important for me.
And what is so enlightening is sometimes there’s big surprises here, you know? And what that tells me is that, oh, wow, okay, so if your son was making decisions for you and you assume, oh, my son knows me, he’ll make the right decisions, but all of a sudden, you see what his values are for himself. Like, where are those decisions coming from? Are they coming from truly knowing someone, or are they coming from your own values and what you, or even your own fears, or even your own guilt?
There’s something really powerful, I think about looking at these deck of cards. It’s a very individual process. Even when I’m doing this with the whole family together. You know, there’s 15-20 minutes when everyone is sitting, looking at their own pile of cards. And when you read this statement, for example, I want to be free from anxiety, or I want to be able to talk about what scares me. You are reading it in your own voice, in your head. So it isn’t like a theoretical thing. It’s very personal. And I have just found. I found this to be the most effective tool, consistently effective, with every age group that I’ve found so far. And so some of this is just being able to have a conversation and tease out what’s really, what’s the real feeling behind the words, or how do we even put into words what our feelings are?
BILL: Yeah. And I see the value of your role there is that, with your presence in the room, kind of gives permission for some people to say some things because they know they’ve got a mediator here, you know, they’re not going to get yelled at. And there will be often strong emotions. Tears will come and people will speak sharply to one another about things that they do or don’t want. But there’s value in that, too, right?
KARLA: There’s value in it. And I think that being a bit of a. I don’t know that I would call myself a mediator, um, even though that is the role, I guess I kind of, we’ll say facilitator. But coming at it from the point of experience of, I have sat with a heck of a lot of families immediately following the death of a loved one. That’s what my experience is, is the family right after a death. And I want to meet with families upstream of that death, and I want to help them have those conversations, because I’m seeing those emotions come out and that anger and that regret, but it’s too late. And that’s where I’m coming from, is like, okay, maybe I will ask some hard questions, but it almost is not even that. It’s just about, like, asking the right questions that are based in experience.
Like, what I’m asking or what I’m bringing up with people is just based on my own experience of how things generally go with families. And I’ve seen all sorts, and certainly, you know, you always hear, oh, death brings out the worst. And in people, sometimes it does. But, it more often than not, it really brings out the best. This is one of those very few and very real life events where what matters becomes crystal clear and urgent.
BILL: Isn’t that a lovely irony, that here at the end of life, suddenly all these wonderful questions arise? So how has this experience influenced you? What has been the meaning of this process in your own life, to enter this territory, even from the early age of 14 years old, that you have been on a bit of a mission here. Can you reflect a little bit about the meaning it’s had for you?
KARLA: Yeah. You know, what comes to mind is that, so my dad died 13 years ago. He had lung cancer. And when he was diagnosed, it was stage 3B. It was serious, and I knew in my heart that he would not survive. I just. It was a gut feeling. That said, I never once had any conversation with him about anything. Not how he wanted end of life to go, not, what the heck do we do after? Like, what do we do after you’re gone? I could not. I was having these conversations with strangers. I was working as a funeral director at the time. I was talking to strangers about this every day, and I never even asked my dad, like, do you want burial or cremation? Like, it’s hard to even say it now. Like, it just feels so icky to have these conversations with your parents, with your loved one.
It was that experience personally. And then combined with talking just with so many families after death and realizing that I’m not the only one. Nobody’s talking to each other about end of life. And that is where I really felt a passion of, I want to be getting those conversations started. I don’t want to keep being in the after the fact reality of nobody’s talking about it. I’d rather be trying to make a difference and making it easier for people to talk.
[OUTRO MUSIC IN]
BILL: Talking about death may feel scary or taboo, but what this conversation highlights is that everyone, at some point in time, will need to consider their own mortality. Karla shared the importance of centering end of life discussions around our own values and beliefs. As a caregiver, you can both support your care recipient in their process of contemplation, reflection, and requests, while also considering your own end of life preferences.
If you are looking for more resources or know someone who is in need of caregiving support, call the Family Caregivers of British Columbia Caregiver Support Line at 1-877-520-3267.
[MUSIC CONTINUES]
Thinking about death and discussing end of life preferences is never easy. We hope this discussion gently nudges you to start the conversation with the people closest to you.
As Karla suggests, birth and death are the bookends of life, something we will all experience.
KARLA: The opposite of life isn’t death. The opposite of death is birth. Birth and death are on either end of our experience of life. They’re like the bookends of life. And just like how our bodies know how to be born, our bodies know how to labour into the world. I trust from kind of what I’ve witnessed, but also just a belief that our bodies know how to die, too. We were born knowing how to die.
You know, if you think of birth from the perspective of a baby, darkness, pressure, uncertainty, but there is something larger or something even just primal about our bodies that knows how to be born and we know how to die. And I hope that there can be a little bit more remembering of that truth and a little bit more acceptance into the unknown and that being okay. It.
[MUSIC DEVELOPS // OUTRO]
VOICE-OVER: Thank you for listening to “Caregivers Out Loud”, powered by Family Caregivers of British Columbia and hosted by Bill Israel. Produced and sound edited by Organized Sound Productions. We acknowledge the financial support of the Province of British Columbia and the BC Ministry of Health – Patients as Partners Initiative.
If you like what you’re hearing, discover more episodes, and find more caregiving resources at familycaregiversbc.ca. And if you find these episodes helpful, please share them with your family and friends who may find it enlightening to hear these stories.
Finally, don’t forget to subscribe to our show on your favourite podcast listening app, so you can take us with you wherever you go. Thank you for listening and taking the time to learn and care for yourself with other caregivers, out loud.
[MUSIC ENDS]