020: Enriching the Death Experience: A Death Doula’s Perspective – Stefanie Elkins

Marty Stevens Heebner:
You may have heard of doulas, those who support mothers through childbirth, at the beginning of life. But I bet you didn't know, there are also doulas for those experiencing the end of their lives. My guest is a death doula, who shepherds your clients and their families to their final days.
Moving your mom, or your dad, or yourself, isn't just about moving things from one place to another. It is much more complicated than that, as are so many things having to do with later life. How To Move Your Mom and Still Be On Speaking Terms Afterward, provides in depth conversations with professionals, older adults and their family members, who share their stories with warmth, understanding and humor.
I'm your host, Marty Stevens-Heebner and here you'll find answers to many of your questions, as well as different perspectives that I hope will inform and inspire you.
Stephanie Elkins, it is so good to see you and thank you very much for being here.

Stephanie Elkins:
My pleasure.

Marty Stevens Heebner:
I've known you for a long time. Let me tell you a little bit about Stephanie.
Stephanie Elkins of Be Present Care, is an Aging Life Care Manager, supporting those facing the challenges of caregiving, the end of life, and bereavement. She offers guidance, resources, and a whole lot of wisdom to individuals and their families, when this inevitable turn happens in later life. Can't get around that.
Stephanie fosters the intimate and difficult conversations we all need to have. How many times have I said that in these episodes? She also worked on the California End of Life Option Act Campaign Team, serving as their California Medical Outreach and Organizing Manager for Compassion and Choices, advocating to improve care and expand choices at the end of life, in a very compassionate and informative way. Such important work and we're going to talk about how you got inspired to do this. But first I want to ask you, what's your favorite memory of your grandparents?

Stephanie Elkins:
I'm going to start with my maternal grandmother. My sister and I, we called her Sopta. It's actually softa in Hebrew, but we couldn't pronounce it. So my memories of Sopta was sleeping over at her house and she was in one twin bed and I was in another. We were pushed together and she smelled like Lubriderm. Such fond memory. I feel like, okay, I need to start wearing the milky cream, the Lubriderm. So it's still around. My sister and I, we would cut up matzah. This is all year round. It wasn't just around Passover and we would crack open the matzah and we would put milk and sugar on it, so it was really sweet, like a cereal. That was like a special treat because then I got coffee.
And driving with her was always interesting because she was the slowest driver. I didn't get that trade from her. And both my grandfathers died before both my sister and I were born, but we were named after them. So we were named after Steven and Lewis and so I'm Stephanie Lynn and my sister is Lauren Sarah.

Marty Stevens Heebner:
How lovely. That's a great way to do it, to carry on the names.
So now let's talk about how you got inspired to do the work we're talking about today, becoming a death doula.

Stephanie Elkins:
My journey was really always in the place of doing service. My inspiration started joining my mom when she was an activity specialist at an assisted living facility. I would do the bingo thing with her. I would call out bingo, before and after, and bringing smiles to individuals' faces and having those connections in that moment was real and felt good.

Marty Stevens Heebner:
Especially the older adults.

Stephanie Elkins:
Yeah, I was comfortable and through my years of working with teens and seeing when people are uncomfortable, going to even the nicest of residential homes or skilled nursing facilities, all you remember is the smell. I would come in and go, "Okay, what can I do in this moment to bring a little cheer?" I saw that modeled in my mom.
So, I continued getting my master's in nonprofit management and Jewish communal service. I always knew about social work and I thought I wanted to work in health and human services, but on the business side of things.

Marty Stevens Heebner:
That is such important work because a lot of nonprofits don't realize that it's a business that does have to be run and they don't necessarily surround themselves with the people who can do that, so that's wonderful that you were focusing on that.

Stephanie Elkins:
That was from really, how could I make a difference, understanding all the different areas of running a business or a nonprofit. I've always been the service of not making any money, if you will.

Marty Stevens Heebner:
You don't really make even nonprofits, unfortunately.

Stephanie Elkins:
Yeah, I did fundraising. It's all about raising money for others, for causes, for some passions. A lot of the passion was the vulnerable populations.
I had an amazing opportunity to come on board with the Leeza Gibbons Memory Foundation. Leeza created the centers because of her own experiences with her mother and grandmother with Alzheimer's. The heartache and the feeling isolated and alone can be huge. And for eight and a half years, I had the pleasure of running these centers that inspired education, empowerment and energy for family caregivers dealing with Alzheimer's and other memory impairments.
I saw the journey of all the different stages of Alzheimer's and dementias and the caregiver journey as well, through education, empowerment and energy. So, that's where I really got to see the different various roles that caregivers put on and how to be of support for those caring for others.

Marty Stevens Heebner:
I remember speaking to a group.

Stephanie Elkins:
Yes.

Marty Stevens Heebner:
At Leeza Gibbons Center out here and it's was such a comfortable environment.

Stephanie Elkins:
Everybody that walks in the door is a guest. You're not a client. You're a guest. It was a living room like environment where everybody was welcomed in. I worked on one. Of course, the connection to community and to other family caregivers is important.
What I noticed that I gravitated to was the stories, especially around end of life. We would have talks on hospice and nobody would show up.

Marty Stevens Heebner:
No one wanted to deal with it and hospice, as you and I know, is such a gift.

Stephanie Elkins:
Yeah. It's something we're all going to need and the idea of having the conversations, or knowing it's a value added service, a lot of times there's a lot of grief of families having to make decisions for their loved ones.
And let's talk about what provides quality of life for individuals, so that's when I did the shift into working for a national nonprofit organization, championing these conversations for people's autonomy and agency at end of life, that there are options and lead with empowerment instead of fear.
I ended up getting another amazing opportunity to work with Compassionate Choices as part of a political campaign, to pass the California End Of Life Option Act. It passed in a year because there were so many legislators and volunteers and medical associations going neutral and Brittany Maynard, 29 year old with brain cancer who had to move out of state and said, "Nobody else should have to do this."

Marty Stevens Heebner:
Because she really wanted to have the choice to end her own life on her terms.

Stephanie Elkins:
Yes, but the idea is you didn't have to move to Oregon to do it. Leave your family and friends and support system to have this option. A lot of times people don't say an option is stopping treatment, not continuing with chemo, or be in the hospital. So, there's many places to change that conversation and have some autonomy and agency on the kind of death you want.
I want to acknowledge when people bring up end of life option or medical aid and dying, that especially when people are already terminally ill, it's an opportunity for a conversation, to discover a little bit more about why they're asking, because there is good care out there in terms of palliative care and hospice care. So when people ask, it's an opportunity to be more curious.

Marty Stevens Heebner:
Provide them with a moment to really talk about what they're feeling about.

Stephanie Elkins:
What it is. Whether if it's pain. If it's quality of life. I know that when I can't go to the bathroom by myself that this isn't quality of life for me.

Marty Stevens Heebner:
I know something like this, some people consider it controversial. I'm sure there are very specific requirements for this and I'd love to have you discuss those.

Stephanie Elkins:
Medical aid and dying is a medical practice, in which an adult 18 or older that has a terminal illness, with a prognosis of six months or less, that has the capacity to make an informed healthcare decision for themselves, get a prescription from their doctor to bring on a peaceful death.
They need to be able to self-administer. They also have to have two doctors to agree on their prognosis. It needs to be in writing and orally communicated.

Marty Stevens Heebner:
Those limitations should settle the questions of whether they're just going to kill certain kinds of people. Like you say, you have these parameters. No one can trick you into doing it.

Stephanie Elkins:
People call it assisted suicide because they don't have another language for it. It's medical aid and dying, or physician assisted death, or death with dignity. The reason why it's not considered suicide is because if you talk to individuals that are eligible for this and they're going through it, they're already dying. They don't consider themselves suicidal. I'm already dying. I'm just trying to have a little control, a little dignity, and this is a legal option in many states and jurisdictions now.

Marty Stevens Heebner:
And also to end their pain because I've seen it with my own parents. The pain that exists often at the end. As you said, they already feel like their quality of life is completely gone, so you're just existing until finally the end happens rather than having some agency in it.

Stephanie Elkins:
We have these myths around death and dying, which is not helpful. The idea is comfort versus curative. If somebody wants to die in pain, that's fine. Whatever kind of dignified death that you want. And for some, this is an additional option.

Marty Stevens Heebner:
Because you can simply wait until you pass naturally.

Stephanie Elkins:
I think that's sometimes what some of the work of death doulas, or end of life doulas, provide for individuals that are terminally ill and their families, to take pause and view this time differently. It's a different approach because life and death are labors of love and not medical events.

Marty Stevens Heebner:
There's a whole gestational process at the beginning of life. It's crazy. It's really painful and uncomfortable.

Stephanie Elkins:
It's messy.

Marty Stevens Heebner:
And it's messy and unpredictable. The same thing goes at the end of life.

Stephanie Elkins:
You got it and that's what this death positivity movement is taking back. Now a death doula does the physical, emotional, and spiritual support, in addition, alongside the medical team and give permission to families to show up in a way where there might be fear.

Marty Stevens Heebner:
So much of this is really about expressing your fears. If someone starts to have this conversation about, "I think I want to end my life my way." And it's one thing if they're comfortable with it. It's another, if you get them talking and you discover that there's just a lot of fear and they need to discuss the unknown that's coming ahead.

Stephanie Elkins:
Medical aid and dying. You can't do it in a vacuum. You can't do it on your own. You need a care team, so it encourages better conversations. Even if somebody's not eligible, if you have dementia and aren't able to make an informed healthcare decision for yourself, you're not eligible. And then you have to deal with the grief that you're not eligible for this and what are other options. There's also voluntary stopping eating and drinking.
Whoa, what is that? What does that look like for me?

Marty Stevens Heebner:
What does that look like?

Stephanie Elkins:
So voluntary stopping eating and drinking is also, along with medical aid and dying, being looked at and spoken about more. Most of the time it has to come from the patients or clients first, more than the doctors or healthcare team.

Marty Stevens Heebner:
What if they don't have a healthcare directive in place, as everybody should. I say that every episode.

Stephanie Elkins:
Yes.

Marty Stevens Heebner:
If they don't have that in place and they're suddenly, because of a car accident or what have you, in a coma?

Stephanie Elkins:
Well, every situation's unique and so with advanced care planning, which is one of my specialties as an elder care manager and end of life doula is where do those coincide and that's around advanced care planning.
One of the first questions I ask is, "Why are you here? What's your story? Or what good or bad death experience has impacted how you view death? What's a story that comes to mind when looking at a good or bad death experience." And some people have had no experience. I try to meet people where they're at and so that's why the conversations are just as important as the directives. I call it advanced care planning because it's conversations and directives.

Marty Stevens Heebner:
It's so important for those things to go together.

Stephanie Elkins:
I've done talks on advanced care planning and one of the questions is, who's going to speak for you if you can't speak for yourself? They might have a distant sister, that's five years older than them that's in their mid seventies and I'm like, I don't know if that's the person I would want. And there's also family of choice, so the question is, what is important to you? What do you need to get this started?

Marty Stevens Heebner:
In a previous episode, we featured Ken Kosoff, who's an amazing estate playing attorney, but who also has his company Solo Aging Solutions.

Stephanie Elkins:
Seriously, Marty, just through your guests, I could fill in everything, all the amazing resources on this journey from aging and end of life. There's a team people that are part of the Marty's Team.

Marty Stevens Heebner:
Thank you. They've been incredible guests and you really do need a team at the end.

Stephanie Elkins:
And who is the team? So, that's part of the questions. I first ask people, where is your advanced healthcare directive? Some people are like, "What's an advanced healthcare directive?" Other people like, "It's sitting on the side of my desk. It's signed and it's with my agent." And then others are like, "My dog ate it."

Marty Stevens Heebner:
Or, "I have it somewhere."

Stephanie Elkins:
I have it somewhere. It sounds familiar. Even colleagues in elder care and end of life, it's so much easier to do for others than yourself.

Marty Stevens Heebner:
Oh yeah. It's the cobblers whose kids have no shoes. It's the doctor who smokes.

Stephanie Elkins:
I try to meet people where they're at. I work either one-on-one with individuals or in group sessions, to provide some education of the different components of an advanced healthcare directive.
One of the more important ones is who's your agent or your decision maker. I don't want to assume it's going to be your partner. The other important component of a advanced healthcare directive is, what treatments you want or don't want at a certain phase and that changes.
So the five Ds of when to reevaluate it. First, is a decade. If you haven't done in a decade. If there's been a divorce. If there is a diagnosis. Some people get a diagnosis, goes straight to treatment and there's really no discussion of plan. So, decade, divorce, diagnosis, decline, and death.

Marty Stevens Heebner:
The five Ds and that's when you really need to reevaluate your healthcare directive and also just have those conversations.

Stephanie Elkins:
This is a process that different times in our lives. And so 18, you should have one when you're going off to college, but it's going to change as you get older, as your relationships, as your diagnosis changes. As COVID happens and we learn a little bit more about care we want, or don't want. Some directives are very basic and then there's others, where you can get a little bit deeper and more specific about what quality of life means to you.

Marty Stevens Heebner:
And what kind of treatments you want to have and not want to have.

Stephanie Elkins:
Interview your doctor because not all doctors in healthcare systems are comfortable. These are all things to consider and how doulas ask the right questions, so you can get the care you want or don't want. You need to have doctors that are going to give it to you straight, if that's what you want. What's really going on? What are your options? What do those all look like, including no treatment. Options can be challenging, especially when it comes to medical aid and dying because not everybody's still comfortable with it.
So, you really can't assume anything as people haven't had those experiences and maybe once they have had an experience of being with somebody and seeing how peaceful it is for the family and the individual, in terms of the dying process.

Marty Stevens Heebner:
Especially if they've seen some really horrible situations, where there's so much pain and confusion and everything. It is so wonderful to give people these choices. A lot of people would want to go naturally but there's a percentage of people, who given their circumstances, would opt to take care of it themselves.

Stephanie Elkins:
Right. Every situation is unique. We're providing the information now just to have a conversation about it because you never know what you're going to do in that situation.
I have some colleagues that are end of life doulas that just focus on one specialty. So when it comes to end of life doulas or death doulas, or end of life midwives, people have different specialties or different areas of working within it. I have some colleagues that only work with terminally ill individuals. I do a lot of the pre-planning, these conversations about advanced healthcare directives, goals and wishes, and being a liaison with adult children and parents to ensure individual safety.
When I talk about safety, I look at it in a few different ways.

Marty Stevens Heebner:
You're so right. There's so many different kinds of safety.

Stephanie Elkins:
So, I look at it as physical, medical, financial, legal, emotional, spiritual, and mental safety, for both the individual you're caring for and yourself, if you're the caregiver. What can we agree on right now? What's going to be the safest thing for everybody involved? And what are the priorities at this stage in this individual's life?

Marty Stevens Heebner:
It's really a gift to your family, to plan for them, how you'd like to be celebrated after you're gone. Because, as we know, someone passes, there's all this grief and then this 20 page list of things you're supposed to take care of immediately, including important decisions, like what's the service going to be like? How do they want to be buried? And if you don't know...

Stephanie Elkins:
It could be a fight in the family. Look, family dynamics, grief and expectations show up everywhere. I've heard so many individuals say it was a gift what my mom gave to my sister and I of getting things in order.
We've learned during COVID the idea of having closure or some sort of ritual. It can be on Zoom. It can be very powerful. Who do you want present or not present? What music do you want or not? What is or isn't important to you? Some people can say, "Oh, I don't care. Do whatever you think is right." That's not helpful.

Marty Stevens Heebner:
You take the burden off of them as they're grieving, picking out your plots even. I knew exactly where my dad wanted to be, next to my mother, in this one cemetery.

Stephanie Elkins:
I think that's part two of the advanced care planning. First is a healthcare directive and then it's getting more of these details of, what does this look like for me? Start thinking and talking about it. It is such a gift.

Marty Stevens Heebner:
So here's a question with death doulas. If they're choosing to take their own way out, obviously there's a set time and place for that. Do death doulas also work with people who choose to die naturally?

Stephanie Elkins:
Yeah. A lot of the work of doulas is about being versus doing.

Marty Stevens Heebner:
Yes.

Stephanie Elkins:
It's a huge distinction in our work because we're used to fixing and doing and you know what? This process is messy and things are going to come up and feelings are going to come up. But how do you hold space for families that are in different places.

Marty Stevens Heebner:
With what's going on.

Stephanie Elkins:
With what's going on. And having somebody take that energy and kind of move it around and have tools of active listening or reframing or what's left to be done.

Marty Stevens Heebner:
And keeping as much peace as possible and having the real conversations about grief and the fear of living without them. Let's talk about that and feel it.

Stephanie Elkins:
Some people could feel relief. The beauty of this work is just showing up for people, at the most vulnerable, and it can be a gift to show up for people at that time.

Marty Stevens Heebner:
It's such important work. I remember when my father passed and he was 90 and he'd been sick for a long time and I was grieving, but I had this strange blend with feeling a bit relieved and freed up. I think that's just not having to worry about the illness now, but there was also so much grief because of course I missed him.

Stephanie Elkins:
You missed him, but you also knew, I don't know if he was ready or not.

Marty Stevens Heebner:
He was. He'd lived till 90 and at the end he had so many things going on.

Stephanie Elkins:
So was it a peaceful passing? How was your dad's death experience for you?

Marty Stevens Heebner:
I had been going back and forth to Buffalo. I live in Los Angeles, to check in on him and be with him for long weekends, about once a month. And then it came the time when we got the call from the doctor, who very kindly and compassionately said, "We do something for his heart, the lungs react. We do something for the lungs, the heart reacts." And I said, "It's time for him to go home and be comfortable and pass naturally."
Being able to be there, bring the hospice in, give him the morphine so he was not in pain. He had shown me where everything was. The safe deposit box key. The will. The trust. He'd already bought the plot next to my mom. I knew he wanted to be buried in the casket. All this and where the service should be. Oh, and he said, too, "I don't want an estate sale. Just donate everything."

Stephanie Elkins:
Wow. As a professional organizer, you're like, "Dad."

Marty Stevens Heebner:
Thank you, dad. That's where I get that gene from it. But it was perfect timing because a dear friend of mine, I've known her since she was five, so my parents were like surrogate parents and vice versa. She was getting a divorce and moving into an interim apartment and she didn't really have much furniture. And I said, "Hey, guess what? Come pick out stuff. Come pick out the items that you'd like." I got permission with my sisters and stuff and she was so happy. I think she still has most of it.

Stephanie Elkins:
Your dad was happy. Ugh. So good.

Marty Stevens Heebner:
And so my mom died when she was only 58. I was only 26.

Stephanie Elkins:
Wow.

Marty Stevens Heebner:
They both died at home. She died of cancer. I knew both my parents would be thrilled that my friend Dawn was getting the furniture. I knew that. So yeah, it was the best kind of passing one can have. Both for him, he was surrounded by his family and his friends had been to visit and all of that. And he had left us fewer problems to have to deal with after he was gone. So, it's an honor to get to work with people who don't have that experience with their loved one who passes away.
Dad had even tidied up the home in Buffalo, so that helped too, although he did keep his tax returns back to 1957, just saying, and he died in 2013.

Stephanie Elkins:
Thank you for sharing that. This is where we learn from our own experiences. Working with family caregivers and end of life, it's following the leads of them. I'm holding space for others and maybe giving some tools and resources and some guidance.

Marty Stevens Heebner:
Are death doulas, the ones who focus on those moments that are the end of life?

Stephanie Elkins:
There is a time where the natural dying process begins. The doula can be on-hand or on-call. Sometimes families are like, "You know what? We got this we're okay." We have hospice a phone number away and you can physically be there. Some are but some aren't because that's just what's important for the family.

Marty Stevens Heebner:
What they choose. So if the family is together with their loved one, and afterward though, they can have a conversation with the death doula, like you, to process all that they saw and what they're feeling.

Stephanie Elkins:
Oh yeah. You can keep the body at home for up to three days afterwards to do a viewing. Now, that's not for everybody, but that is an option and there's doulas that specialize in home funerals.

Marty Stevens Heebner:
It's extraordinary. You and I both live in Los Angeles. What if somebody lives in Michigan and would like to contact a death doula?

Stephanie Elkins:
It's a growing movement. It's not an accredited movement. I got a professional certification at the University of Vermont, End of Life Doula Professional Certificate, so there's various programs. There is a national membership organization called NEDA, National End of Life Doula Alliance, which is a membership based organization. But depending on where the individual's at and what they want, they need somebody dealing with family dynamics, grief and expectations in the beginning. Or, if they're looking to put together a ceremony, a pre-event celebration and legacy planning. Or, if it's really focusing on after death, what are the options? And then there's some that specialize in Reiki and I do Reiki and there's different personalities, just like anything.

Marty Stevens Heebner:
And different ways of comforting.

Stephanie Elkins:
I think the whole idea of being versus doing is a lot of it. But then there's the coordinator aspect of a lot of this, so I think finding the balance of that. Some are more spiritual and religious. Some have a clinical nurse background. It's really knowing what's important for you, for your family member, based on their illness, what their needs are.

Marty Stevens Heebner:
And like you say, the personality fit. Some people click more than others.

Stephanie Elkins:
Trust that. I think that is definitely part of it.

Marty Stevens Heebner:
Trust that connection that you feel. So someone is considering working with the death doula. What question should they be asking the people they're talking to and considering?

Stephanie Elkins:
It really depends on what kind of services that they're looking for. Are you looking for getting your plan in order? Maybe reviewing advanced care directive? What kind of support?
But by the time people come to a doula, they might already be aware of what their needs are. I had a colleague who had a mother living in Northern California and she wanted to use medical aid and die, but she wasn't eligible. And so then I had a conversation with him and his brother about voluntary stopping eating and drinking. Then he ended up talking to his mom. I ended up finding a doula in Northern California to work through that and then she ended up getting the care that she needed there.
He was so appreciative of the information, with mom being unhappy for so long, there can be a palliative effect. People are able to say goodbye, and then there's this kind of letting go.

Marty Stevens Heebner:
Sometimes it can take you a bit deeper into the grief, but by covering that up, it's going to explode some other time. Really acknowledge what's going on, be there for it, and just let it knit itself into the fabric of your life.

Stephanie Elkins:
The idea is that there's always going to be, should haves, but the idea of not having regrets and really showing up for yourself and for others, if you can.

Marty Stevens Heebner:
It's not unusual to have an estranged adult child suddenly show up at the end and need to spend time with that parent and keep them alive for as long as possible, even if they haven't seen or spoken in five or 10 years.

Stephanie Elkins:
Right. That's why the protection is around advanced care directives and why directives and the conversations are so important because people do show up that maybe doesn't really know that person that well.
When I was working in hospice and this young man, it was really good friends with his neighbor that was dying. By the time we got over there, his friend had already died and because the directive wasn't there, they had to call the coroners and wait for his estranged family to find him to decide what to do with the body.

Marty Stevens Heebner:
Oh my goodness. How painful.

Stephanie Elkins:
That's why the importance of who's going to speak for you.

Marty Stevens Heebner:
And we don't want to talk about it in our culture, because we're such deniers of death and deniers of old age, but hopefully we're really trying to get people to not be afraid to talk about this and to take action and to plan. We get such a short lease on this planet. Even if you live to 110, it's only 110 years on the planet.

Stephanie Elkins:
I think a lot of healthcare professionals feel like that they've done something wrong if you die and that's not the truth. It's honoring that individual and what's important to them. So, there is a growing movement of various websites and startups and resources, really wanting to encourage conversations.
One of the things I've started hosting are called Death Overdraft Happy Hours, combining my passions of beer tasting and holding conversations around end of life. My colleague friend, Jill Shock and I, started it and now I continue to facilitate conversations at craft beer locations across greater Los Angeles. Let me know if anybody wants to bring this to a brewery near them.

Marty Stevens Heebner:
Stephanie, you're the shoulder to lean on and the shoulder that's got your back. You have such compassion and such a love for working with older adults and their families. We're going to have all your contact information on our website with your episode and also some great resources that Stephanie's shared, so definitely check out the website and use those links. Thank you so much, Stephanie, really great talking with you.
Marty Stevens-Heebner: Thank you so much for listening to How to Move Your Mom (and still be on speaking terms afterward). Please visit www.howtomoveyourmom.com for more information about this episode and for additional podcast episodes, featuring more extraordinary guests and conversations. Until next time, this is your very grateful host Marty Stevens-Heebner.