(dramatic music) - Doulas provide guidance and support for pregnant women, and these childbirth coaches help usher in new lives, but did you know there are also death doulas?

These are people who prepare you for the end of your life.

Carley Cotner is a death or end of life doula based in Bloomington Normal, and we're gonna talk about her experience, good to see you.

- Yes, thank you for having me.

- What title do you prefer?

Death Doula, end of life doula, or something else?

- I typically use the end of life doula.

It tends to feel a little less aggressive to people when they're hearing it.

Still either.

Either is fine, either is fine.

I think it's a preference more on who is addressing me and what they prefer.

But I'm fine with either one.

- Well, as an end of life doula, that's something that I wasn't familiar with until about a month ago.

Tell us what it is you do, and what is your definition of an end of life doula?

- Okay, so I think the definition of an end of life doula is really kinda open to interpretation.

I think if you lined 10 people up and asked what they think it is, it would vary.

My goal as an end of life doula is just to hold space for the dying person and for their family, and allow them to kind of lead the way on what they want to experience in their death.

When we are dying, I like to like use the analogy that we're kind of like a flower and we wilt.

So there are natural processes during the dying process and during that journey that a lot of people just aren't aware of, and it can be very scary.

People don't like to talk about death.

They don't like to think about it, and it doesn't have to be that way.

So I think the main goal that I have is just to educate people on their options and let them know that death doesn't have to be this scary looming thing.

It's going to happen to all of us.

We are here.

It is part of it.

And even though there absolutely are circumstances where we don't get to choose the way that we die, if we can hold some of that control, I think it can help the process be much better for us when it is our turn as the dying person and also for our families in knowing that we felt some peace truly during that time.

- In doing some research on this, you know, unofficially, end of life doulas have been around since the beginning of time.

But really, it seems like in the last 15 years or so, the movement's kind of exploded worldwide.

Tell me a little bit about how you first learned about it and what interested you in it.

- Sure, so I previously actually was working on getting my certification as a birth doula and attended some births.

Loved it, it was wonderful.

However, it wasn't until I was working in a skilled nursing facility and was bedside with people as they were passing that I realized that this is a very underserved community.

Not just seniors, but younger people who we had in the facility who were dying there and they knew it.

Families also just weren't prepared for what to expect.

What are they going to see and smell and hear during that time?

And just not able to really care for themselves as they are trying to care for their dying loved one.

So it was then that I started thinking, there really needs to be a person for this.

I didn't look too deeply into it at that time.

I just sort of assumed that role alongside my job at the nursing home at the time, and did what I could to kind of help keep people comfortable, keep families happy and supported, and just do what they needed, just be that support person for them.

It was earlier this year, a mother of one of my daughter's classmates, she passed away in a horrible car accident earlier this summer.

and knowing that the family was not prepared for that.

She was very young.

It really made me start thinking about my own morality, and while none of us want to go in a tragic, terrible way, I started thinking again about the residents at the nursing home, and some of them did have very specific wishes or regrets or things they mentioned while they were actively dying, and it made me just start to think, how can we support them before they're there, or during that dying process and started thinking again, there has to be a person, there has to be a name for this, and I just looked up death doula, and I didn't know if that was going to turn anything up whenever I searched it, and it did, and I did some research.

I looked into various groups that offered trainings and realized that I have acted in this role already so much.

But there was still a lot, a lot to learn.

So I signed up for a training and was awarded a scholarship with INELDA and got that training completed this summer.

- Well, congratulations.

- Thank you.

- INELDA, by the way, is the International End of Life Doula Association.

We'll talk a little bit more about that association and some others in just a bit.

But it sounds like, you know, you're really an advocate for the person who is transitioning and, you know, someone may have a will that says, I want all my stuff to go to whomever, but it may not say, this is what I want at the end of my life.

- Yes, exactly, and I am, as an end of life doula, I'm certainly not a replacement for a lawyer.

I am not a replacement for a licensed therapist or for hospice care.

Hospice nurses are wonderful.

They cannot and should not be replaced.

But there are emotional and spiritual needs that can't always be met by the services that are in place.

It's not a competition with the other care providers.

It's just a non-medical role that I'm trying to fill and kind of fill in that gap where medical care ends and the spiritual and personal needs really begin, whether it be, you know, I've had people tell me that all they wanted was to write a book.

They just wanted to write their stories, and that was one resident at the nursing home, and I think about her all the time.

She just wanted to write her stories, and we did that.

I helped her with that.

You know, I would jot down what I could, and I don't know how much was true and how much she was gossiping, but she loved it and it made her feel so good, and it was wonderful that she got to have a little bit of that before she passed.

I, during my training, started thinking if I got to plan my perfect death, if I had a good death, what would I want that to look like?

What smells would I want?

Would I want my family around or friends?

Do I want children there?

And how do I want my legacy to be honored?

How do I hope to be remembered?

And how can I do the work now to kind of hope that happens.

The way that our loved ones die is remembered in every fiber of our being.

I don't know anyone who hasn't experienced a great loss.

At some point, we all will, and if it goes smoothly, we remember that, and if it goes really poorly and it's a horrible end, we remember that too.

So my goal is just to help people have the good death that they want for themselves and for their family members.

- You mentioned the term a couple times, good death.

Let's talk about that a little bit more.

Is that basically when someone dies, they die in the environment or circumstances in which ideally they would want?

- As as close as possible.

As close as possible.

And you know, sometimes not every box on the list can be checked.

You know, if we live in the middle of Illinois, we may not be able to facilitate dying at the beach.

It may not be possible.

But if we can meet as many of those needs as possible during the days and weeks leading up to the death and during the death itself, and also after the death, it can help people feel a bit more at peace and ready to go knowing that their wishes are being honored and respected.

- It seems like it could help the family too.

- Absolutely, absolutely.

- Knowing that if their loved one has to go, they're gonna go out their own way.

- Yes, yes.

Absolutely.

My grandmother had very, very silly wishes on what happens with her after she passes, and every single silly wish that she had, we honored.

We honored.

Is it what I would want for myself?

No, but it's not about me.

It's not about me.

And when I die, it's not about...

It is about my family.

I do want them to cope and grieve in a healthy way.

However, what I choose for myself does not have to be the same thing that someone else chooses.

- You mentioned before that you're not a hospice nurse, but you would work alongside that, and as with a beginning of life doula, you're not prescribing medications or doing anything in the medical side of it, correct?

- Correct, so I wear many hats professionally.

I do work in the medical field.

I am not a nurse.

However, when I am entering the space bedside with someone who is passing or is planning their death, whether it be legacy work or otherwise, I am no longer acting as a medical professional.

I am there as a support person and they are guiding the way.

So no, I do not prescribe medications.

I can offer information.

I can kind of refer elsewhere.

I can provide other contact information for those who can.

If somebody is in need of recommendations for hospice companies, I can supply that.

But that is not something that I do myself.

- Where does spirituality fall in all this?

Because I know that there's some people who are spiritual, others aren't.

There are probably end of life doulas who are and who aren't.

So how does all work?

- It really just falls back on it's not about the doula, it's not about my wishes, what I believe does not matter.

I am happy to assist someone whether they have spiritual, spiritual connections or not.

It doesn't affect my ability to do my job or to provide that support and that service.

I may not know everything because no one does.

I am not an expert on religion or various spiritual practices, but I am happy to learn and even just talking about, you know, as the dying person, talking about what they believe can still help, it can still bring peace.

If they choose to, if they want to educate me, I will listen.

I will gladly listen.

I will learn what they need and try to provide that or try to find a community who could.

- Sure, let's talk a little bit about the organization that you got some training from.

You mentioned them first.

INELDA, the International End of Life Doula Association.

How does that, you know, we know as a doula you're not licensed by the state.

You know, I guess technically anyone can call themselves an end of life doula, but you've taken specific training through this organization.

Can you tell us a little bit about that training?

- Yes, so it was a three day intensive with much more pre-work ahead of time.

There was a lot of work I had to complete beforehand.

A lot of research I had to do to prepare for the class, and then it was a three day intensive.

It was about 40 hours that I was with the class and with our instructor just soaking it all in.

There was work we had to do after as well to show what we had learned and how we plan to apply this to our future practice.

There is further certification that's available within INELDA, so I am an INELDA trained end of life doula.

I am working toward my certification.

They have very strict, I guess, protocols that you have to follow before you can become certified with them, so there is an application process and a certain number of cases that I will have to present them before they will review my application.

There are other groups as well that offer similar certification, similar trainings, but this one aligned most closely with what I was looking to do.

- Anything surprise you that you learned when you got into the class or anything?

- Yes.

- Unexpected.

- So not necessarily unexpected, but just something that I didn't know a lot about that now I am trying to find more information on was different, different options for dying if we are faced with a terminal diagnosis.

I have seen over the last several years, especially lots of kind of aggressive or shocking articles written about what ultimately is medical aid in dying.

Some people refer to it as physician assisted suicide.

It is not that, I hate that phrase.

Medical aid in dying is not legal everywhere.

There is legislation in process in Illinois to try to legalize it here.

It's not an option for everyone.

There is an application process.

There are no laws currently surrounding voluntary stopping of eating and drinking, which is something that I had not heard phrased that way.

I know and knew from my time working in the nursing homes that toward the end of life people want to eat less.

They want to take less by mouth because their body is dying.

It's no longer, it's coming to an end.

The processes are no longer allowing them to eat and drink without feeling pain.

Because there are currently no laws surrounding that option, it is something that can be considered by anyone at the end of life.

It can be made more comfortable with help of your hospice nurse and providers.

If they are on board, there are medications they can prescribe to make that process less painful for you.

Ultimately, I guess a good example is if I were diagnosed with an aggressive cancer and I was told that there's nothing further that we can do.

It is something I could consider, and ultimately, my cause of death would be starvation or dehydration rather than dying from taking a medication that induces the death or allowing myself to continue to get sicker and dying of cancer.

- That is interesting.

I think that's a topic for another program.

- It is, I'm sorry.

- That's okay, don't.

- Because at the end of life, you know, a lot of people are ready to go.

Maybe they're suffering, or they're just, they've had it, and again, your job as an end of life doula is probably not, I doubt tell them where to go, how to do it, and everything else, and just kind of be there to support their wishes.

- It really is.

I sort of act as a mirror, and if they are saying that they are having, if they are voicing that they're having regrets, I can ask, you know, do you wanna talk about that?

What are we regretting?

What could we, if given the chance, what would you have done differently?

And just talking through those things can really help make the end of life feel less heavy.

A lot of people hang on longer than what they want to or longer than what their family wants them to sometimes because they're just unresolved, unresolved emotions really, and our bodies are incredibly resilient.

However, when we are ready to go, we should be able to go peacefully.

- Looking at the INELDA website, you're one of 11 trained doulas in Illinois.

There may be more, but that's what was listed on the website, and you're the only one in central Illinois.

So you potentially have a lot of, I don't know if the word business is what I want to use, but a lot of clients, potential clients.

How does that work as far as, is this something that you eventually would like to do as a living?

- I don't know that it would be feasible, because death is still a very taboo subject.

People don't love to talk about it.

There is no one beating down my door saying, please sit at my bedside or sit at my loved one's bedside.

There are a lot of questions.

There are a lot of, so what do you do and how could this help?

I have had quite a few people reach out to me just wanting to talk, just wanting to get coffee and we're setting those things up.

However, I don't have any families that I'm actively working with currently.

I hope that changes.

However, if it does not anytime soon, that's okay too.

I don't see it being a full-time thing for me.

I don't know that I would want it to at this point.

Maybe in 10 or 20 years that would be something that I could commit to full-time.

But right now, I have a full-time job.

I love it, I'm very happy, and doing this voluntarily currently is enough.

- Well, that's good.

As far as getting the word out there, you had an event recently in Bloomington Normal.

Tell us about that.

- Yes, so we had a death cafe, which is not, it's not a term that came from me.

There have been hundreds if not thousands of them elsewhere.

I utilized Blooming Life studio.

It's a yoga studio in Bloomington.

The owner is Kim Hayes.

She allowed me to use the space for an afternoon, and it was very intimate.

There were about eight of us who got together, and I took off my doula hat.

I was not there to promote my business or my services.

It was just an open space to talk about death and dying and everything in between.

We do have another one planned for September.

It'll be September 15th at 2:00 at the same location, and it's just an open space to discuss and see where it goes.

- I'm curious without, you know, I don't need to know who was at the death cafe.

but I'm curious, were those people there for their own curiosity or was it to talk about maybe a family member or a friend?

- I think it was a bit of both.

There was a variety of people there, which was great because everyone, everyone is going to die.

We are all going to be affected by death personally and just as ourselves when the time comes.

I don't want to share too much because it is a private setting.

However, the conversations were a little slow at first.

They did pick up and we shared about our fears regarding our own death, and it did get lighthearted in some parts, and people were apologizing saying, "I'm sorry, I don't mean to make jokes," but it's okay because all of these feelings are acceptable and valid, and talking about big, heavy things all the time, you have to take a break.

You have to find the light in it.

Some people were discussing, you know, how to have these conversations with their family members, how to encourage their parents to start planning and start thinking about what do they want at their end of life, and kinda how to bring up that topic without feeling like you are digging a hole for them, and it's not that we are wanting anyone to go anytime soon.

We absolutely don't, but it is important to plan.

- Yeah, and too many people go just like that, you know?

My dad dropped out of a heart attack.

He didn't have time to tell anybody what he wanted, and I guess, you know, if you have an illness where you know, okay, I'm gonna go soon, you can make the best of that time that you have left.

- Yes, absolutely, absolutely, and you don't have to wait for an illness or any terminal diagnosis to start thinking about these things.

I, in June, during my training, we were heavily in that head space of what do you want your death to look like?

And since then I've revisited and kind of changed some things in my journal.

I'm like, no, I think I would like this instead, so it's important to think about and just revisit every few months and see if there's anything you would want differently.

- One of those things that's not easy to talk about, but for someone like you, you can kind of get the ball rolling, and I'm sure you know that the cafe people were very hesitant at first, but once they heard other people talking and said, oh, it's okay to to talk about this, we'll make it.

Carly, what's the best way for people to get ahold of you if they have any questions?

- So I do have a Facebook page for my business.

It is Reverent Partings.

You can also find me reverentpartings.com and all of my contact information is there.

My email and phone number is listed there as well.

- I have a feeling once people see this, not only are they gonna have questions, but some people might be interested in actually getting into this field because it's- - I hope so.

- It's interesting.

Like you said, it affects all of us whether we like it or not.

- Yes, absolutely.

- Carley Cotner, end of life doula, thanks for joining us, we appreciate it.

- Thank you for having me.

- Anytime.

And thank you for joining us.

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