You may be thinking, what in the world is an end-of-life doula? It is a non-medical person trained to care for someone physically, emotionally, and spiritually at the end of life. You’ll be surprised at how uplifting this conversation as Janie explains how a doula can make a huge difference in how people die and live.
IN THIS EPISODE, YOU’LL HEAR ABOUT THINGS LIKE:
How hospice care is augmented by the work of a doula
How doulas bring deep meaning to the dying experience.
How a doula’s focus on the positive aspects of the dying person’s life helps the grieving family.
What kind of training is needed to become an end-of-life doula?
SOME QUESTIONS IRENE ASKS JANIE:
How do doulas help the dying, who wonder if their lives have any meaning?
How do doulas handle the differing religious and other views of death and a dying person’s visions of loved ones on the Other Side?
What is a Vigil Plan and a Legacy Project?
Listen to the podcast here
Janie Rakow – End Of Life Doula And A Founder Of INELDA (The International End Of Life Doula Association)
Our esteemed guest is Janie Rakow, who is an End of Life Doula. You’re probably thinking, “What in the world is an End of Life Doula?” It is a non-medical person trained to care for someone physically, emotionally, and spiritually at the end of life. Janie’s work as a doula is complemented by her years of experience as a certified emotional freedom technique practitioner, a hypnotherapist, and a Reiki level two practitioner. She brings the learning from these other modalities to her work as a doula as appropriate and in the context of what people ask for as they face the end of life.
Janie is at the forefront of an amazing movement that is changing the way we die and, therefore, the way we live. She has been a hospice volunteer since 2001, providing emotional and spiritual support to patients and their families through the end-of-life process. In 2010, Janie became an End of Life Doula, and in 2013, she took on the additional role of a Lead Doula.
In 2015, Janie’s passion for doula work led her to help found INELDA, which is the International End of Life Doula Association. INELDA is a nonprofit organization dedicated to advancing the end-of-life doula approach, which fosters the use of end-of-life doulas in hospices, hospitals, communities, and directly to dying people through the service of private practitioners. Janie, it is a true honor to welcome you to the show. I know you’re going to enlighten and inspire many people about end-of-life care and plant many seeds about how doulas can make a huge difference, not only in the way people die but also in the way people live.
Let’s begin what’s going to be a fascinating, enlightening discussion with a question about you. You have a background as a certified public accountant and a certified financial planner. What motivated you to change direction to learn alternative healing modalities, become a hospice volunteer, then a doula, and now to also teach others about becoming doulas?
Thank you, Irene. For me, this goes all the way back to my twenties. My dad was a CPA. Growing up, my dad always told me, “If you become an accountant or CPA, you’ll always have a job and you’ll always be able to earn a living.” Being a good little daddy’s girl, that’s exactly what I did. I went to work for one of those big accounting firms and, pretty quickly, I saw that I did not love this work at all, but I still went down that path.
When I was in my mid-twenties, I had a best friend that was killed. She was hit by a truck in New York City. That sent me on a long journey about death and dying. That was the first person in my life that I was very close to who died. That sent me on a journey about life, about death, and about alternatives. I was fascinated by that, but I still went on with my accounting work.
Along the way, I was married and had children. 2001, September 11, I went off to the gym, running on the treadmill, looking up at a TV, and I saw this plane go into one of the Twin Towers and the other plane go in. I live outside New York City in New Jersey, so I had a big community of people I knew would be impacted by this. That day was a wake-up call for me personally. I said, “What am I doing with my life?” Life can change in one minute and I am in a job where I feel stuck and unfulfilled. I happened to be reading a book about hospice at that point and it fascinated me.
What a coincidence. Why were you attracted to read a book about hospice?
It was Damien Brinkley who also talked about the afterlife. He goes off on a lot of different things, and one piece of it is hospice. I thought to myself, “I need to do something else. Maybe I should volunteer. Maybe I should give back to my community.” That’s what I did. I quit my job, told my husband, “This is it. Maybe I’ll come back to the CPA part at another point,” and I volunteered at a hospice to work with people who are dying.
That takes me to another question. Could you define for our readers what exactly hospice care is? I know that hospice care social workers also work with the dying in their families. How is it augmented even more by the work of a doula?
Somebody who comes onto hospice has to have a terminal diagnosis, six months or less to live. They can be re-certified by hospice. They can live longer, but that has to be the diagnosis by a doctor. Once they are part of hospice, hospice has an entire team to take care of them. There’s a doctor, a nurse, a social worker, a chaplain, and there are volunteers. That’s the core of hospice work, this team approach when someone is terminally ill.
What we found was happening, my partner, who invented the doula model that we now use, is a social worker. He was at a large hospice in New York City in the early 2000s. Time after time, he kept seeing people die, not in the way they had planned. Either somebody panicked at the end, they wanted to die at home and they were whisked off into the ambulance, dying sometimes in the ambulance alone without their loved ones, and sometimes dying in the hospital.
Time and time again, he kept saying, “We’re missing something here. There has to be more.” He had a friend who was a birth doula. She was taking birth doula training. She was so excited about it that she started to tell him. He started to think to himself, “There are so many concepts here with birth and death that are so similar. Maybe I can apply something here to end of life.”
He was working in a huge hospice in New York City. He took a birth doula training and he came out of that training saying, “I absolutely see a correlation here.” He started to think about it and form a model for the end of life. Hospice is amazing and has a team that is wonderful, but with budget cuts and how much hospice pays the nurse, the social worker, and the chaplain, they cannot be there for the family and the dying person in a way that doulas can.
They have a limited amount of time. The nurse could come in once or twice a week for an hour. She’s got a load of patients. She or he needs to move on, same with the social worker. He kept seeing these gaps. The family needed more. They wanted more. They didn’t understand the structured part that could be created with meaning, legacy, and missed opportunities.
For instance, in the hospice team, everybody is doing their thing, but they can’t stay with the family and with the deceased. You’ll fill in all those gaps.
They don’t have those hours to talk to somebody about the meaning of their life and to create legacy projects that we teach our doulas to do. Hospice can do that in limited amounts. Not because they don’t want to, it’s because they don’t have the time. I have been a volunteer in hospice for many years and they’re getting increasingly crunched in terms of the time they have with patients and the family. Their load is huge.
Now, when the doulas come in, generally, the nurses are so happy to see us because they say, “Thank God you’re here. I have to move to the next room.” The doulas can fill in those gaps. We do vigil plans, which we can get to later. They can be there when someone is actively dying to implement these vigil plans for hours. They can take blocks of time, 4 hours or 6 hours, to be with the patient and the family so they can get rest and they can understand what’s happening. They understand the symptoms and do the beautiful work of reading to them, music to them, touch, whatever is involved. It’s very comprehensive.
I want to talk to you about these vigil plans and the legacy project. Is the legacy project part of the vigil plan?
To explain it more fully, our model is broken into three phases. The first phase is what we call summing up in planning. Somebody has a terminal diagnosis. If we can get to see them early enough, we start the first phase, which is the summing up in planning. We are talking to this person about their life. “Who are you? Tell me about you. Do you have children? Are you married? What are your hobbies? Where have you worked?”
In doing this, just speaking to them for hours, we get to understand who they are. Everyone is different. From that, we can see these threads across their life and we can start to think about legacy projects. We created a memory book for one woman. Her daughter sent out an email to all the friends and relatives and said, “Everyone, just send in a page or pictures.”
She created an entire book of all the wonderful things that people said about her mom. That book was opened and her mom saw it before she died. Hearing is the last to go when you’re dying. It’s pretty much been proven that people can hear until their last breath. The doulas were able to sit bedside and read that book what everyone was saying about her, the stories, and the beautiful things as she was dying.
When I went to the funeral and came back afterward, this woman was Jewish, so there was a shiva, that book was on the table. Everyone was going through and saying, “I remember that. That’s an amazing story.” That book lives on now for her grandchildren. That’s an example of what doulas can do for legacy. The sky’s the limit. I can tell you so many different legacy projects.
The thing that I’m thinking is that this also helps people with people’s grief.
You’re absolutely right. It helps. Number one, when the person is ill, it focuses people on something positive. Everyone is not just sitting around waiting for this person to die. You’re focused on their life, a life that they have lived. When people are doing legacy work, everyone is focused on that. That legacy work can continue after the person dies. Stories can keep pouring in. One woman did a recipe book of all her favorite recipes that her sons loved. That can be added too. Yes, it helps tremendously with grief afterward.
You don’t think of it that way, but it’s almost like it offers a completion. There are no more would have, could have, and should have for people after the person has passed.
People remember things that they haven’t thought of for 30 years about their life and it makes them smile and laugh. “I remember I did that with you.” All the stories come pouring out. You can do an audio. Many of our young people who die and have little children will do an audio or a video, letters to be written to their children upon marriage and having babies.
Your grandson is visiting you and you know you’re not going to see him marry one day, but you want to leave something for him. A doula can help you to write that and put it together.
I did this with a woman who was dying and whose daughter was pregnant. She said, “I’m not going to be here for my unborn grandchild,” so we wrote a letter. I helped her write a letter to her unborn grandchild. We also wrote a letter to her daughter. We went back to when her daughter was born and the memories she had when she birthed her daughter.
There are so many things in terms of meaning and legacy. People feel much more fulfilled when they’re focused on that. They feel like they’ve accomplished something. They’ve left something. They’ve talked about something in their life that had meaning. That’s the beginning role of the doula when we first come in.
I’ll bet you get some people who will say, “My life didn’t mean much.”
That’s why we don’t come at it that way. We never say, “What’s the meaning of your life,” or “Let’s create a legacy.” You sit down and talk to people, “Tell me about yourself.” This woman, the one who wrote a letter to her unborn grandchild, I was talking to her. We weren’t necessarily talking about writing a letter. I said to her, “Tell me about your daughter.” She started to tell me and I said, “Did your daughter ever give you any trouble? Was she difficult?” She said, “No, my daughter never gave me a day of trouble in her life.”
I said, “Tell me about when she was born.” She said, “When she was born, that’s when she gave me trouble.” She went to this whole story and it turns out she was going to give her up for adoption. In that story came out that her mother said, “No, I will take care of this child. You go back to work.” This amazing story, not because I asked her, “What’s the meaning of your life?” but just talking to people, you uncover things about their life. That was literally in an hour and a half of knowing her. Sitting down to take the time to talk to somebody, it’s amazing what you can find out.
Did her daughter know that story?
Her daughter did. I asked her that. We were writing the letter to her daughter, “You gave me trouble when you were born and it was so difficult.” I said to her, “Does your daughter know this?” She said, “Yes, she knows this.”
You also have an inspiring story of a man you worked with who had ALS. Do you want to share that? You said he was your biggest teacher.
He was. We were called into the hospital. He was in palliative care. He had ALS. It’s a very insidious disease. For him, it started at the bottom, at his legs and his feet. It works its way up slowly so that there comes a point where it’s very hard to breathe and you can no longer talk. When I met him, he was in the hospital and he could no longer speak.
He had a BiPAP machine over his face, helping him breathe, and forcing air in and out. He could not move a muscle in his body, but his mind was completely intact, which is the horror of this disease. He could understand everything, but he could not speak. Four years before he was diagnosed, he knew there would be a time when he couldn’t speak so he decided to teach himself Morse code.
He was going to communicate through his eyes, through blinking with Morse code. We, as doulas, were terrified. We’re like, “How are we going to communicate with him? I’d never done this before.” When we came into his room, his wife was always there with him all the time because she was so dedicated to him and so afraid that the BiPAP machine would slip and he would suffocate. He was in his early 60s and they had no children. She welcomed the doulas to help her because she was exhausted.
Had she reached out to you? How does that work?
We were part of the team at a hospital. The doulas were volunteers. My company, INELDA, had trained at the hospital to have a doula team. The doulas were called in. An email went out to all the volunteers, “We have a new patient.” We were called in to be with them. He wasn’t actively dying when I met him, but he wasn’t well. He had taped behind him on the hospital bed a whole chart of Morse code. If you know Morse code, the letter A could be dot dot dash dot. The letter A could take a long time.
We were armed with pen and paper. His wife showed us what to do and a quick blink would be a dot and a long blank would be a dash. He communicated to us that way. From the very first minute I met him, he made jokes. He made the doulas feel so comfortable. He was such an inspiration to all of us because he had such a spirit. This man was in tremendous pain and couldn’t talk. He was so patient with us and so we worked with him.
He must have been very grateful for you to be there.
He was extremely grateful. His wife, I’m still friendly with her. She was extremely grateful to have the doula’s help. They were an amazing couple.
You become companions to people as they’re going through this. It’s not just a service in and out of their lives. You become their friends and companions.
One of my partners did an amazing guided imagery visualization because he no longer had use of his body and loved to hike and be outdoors. For 30 minutes, she brought him back in his mind on a hike on the Delaware River. She started from their house packing a picnic bag, a lunch into the car with him and his wife. She put every detail and sense into this visualization, so he could be back in his mind, feeling like he was with his wife. He was taking her down the Delaware water gap, getting out and hiking, tasting his unbelievable lunch, savoring it, and feeling the sunshine and the wind through this amazing guided visualization. At the end of it, he had tears coming down his face and he said he was so grateful.
Doulas feel a need or a calling to be of service. How do you train them? There may be people reading this who are saying to themselves, “I think I’d like to do that.” How do they proceed? Do you train them online? Do you train them in person? You also said this is a volunteer position, so does INELDA raise money? How does that work?
It doesn’t have to be a volunteer position. People come to us and reach out to us from all different backgrounds. We’ve had doctors, nurses, social workers, chaplains, people in the field ready, and people not in the field. We’ve had lay people. I’m an accountant, that’s my background. I came to this. We have many people who have gone through the death of a loved one and either said, “It was horrific, there has to be a better way,” or, “It was so beautiful. I feel called to this work.”
All we tell people is if you have an open heart and you want to be of service to somebody, that’s all you need. You don’t need a hospice or medical background to learn this work. We’re not doing any medical work. We are not hands-on. Anyone who has an open heart can learn this work. We teach it in person. We do a very comprehensive training. It’s over three days. Our training is all on our website, which is INELDA.org. We have our whole year planned out where we’re going.
You’re in person, not through Zoom or whatever?
We’re there. I’m training in California or wherever. We’re across the country.
You travel to different locations to train people.
There are 6 of us who are trainers, 3 of us are the founders of INELDA. We are traveling everywhere. We’re in Portland one week then in New York City the next. We are all over the country training. All you need to do is register and show up for training. We personally don’t believe in online training for this piece because there’s so much emotion involved. We bring people through their own exercises to explore death and dying in their lives because if they’re asking somebody else to talk to them about these deep things, we need to know what it feels like too. We at INELDA believe very strongly that it needs to be an in-person training.
I can imagine that taking the training would trigger a person whose training would trigger them like crazy for their own issues and all. Part of what you do must be to help them release whatever is inside them.
Start thinking about something buried within them so they can be of service to somebody else. Their own stuff doesn’t get in the way. It’s very important that there are boundaries and no judgment. The doulas have to be very aware of that trigger that happened here in this engagement is mine and to be mindful of that.
I would imagine they’d also be triggered by going to see different family systems or dynamics. They can’t change that, though they probably would like to on occasion.
We cannot change and fix. That’s another difficult thing for the doulas to absorb. We are not there to change. We’re not there to fix it. We’re there to help somebody through their own journey. This is not necessarily going to be fixed at all, whatever is happening. One thing you touched on that I do want to clarify is this does not have to be a volunteer position.
Some people want to do this and go to a local hospice and enhance their volunteer skills with things they have learned as a doula. Many people are now saying, “I want to do this as a job,” much like a birth doula. I want to go out and hang a shingle. We have a directory on our website where people find our trained doulas. Many people are also starting to do this as a job.
Do you give them a recommendation?
We started a business training class, which is a separate class for people who want to learn how to do this that talks about contracts and rates, social media and website, and how to get started in a business as a doula.
There are people who don’t know what they want to do with their lives and they want to serve in some way and they want to help. This is such a wonderful vehicle for them.
We tell everyone, “If you’ve never done this before, you have to start somewhere. Go to your local hospice. They want volunteers.” They need volunteers. Go volunteer for a while. Work with people who are dying. You don’t have to bang down the door and say, “I am an end-of-life doula,” because they won’t know what you’re talking about or they’ll be threatened sometimes.
Volunteer and work with people who are dying. You’ll have these other skills like playing music to somebody, somebody who loves Tchaikovsky, or somebody who loves heavy metal. Everyone is different. That simple thing of reading, playing music, doing things at the bedside, touching, all of that is so important to those who are dying.
I’m sure you encounter a million different religious backgrounds and other views of death. Also, you probably witness people seeing their loved ones on the other side as they’re starting to come closer to their deaths. A) Is that a commonplace experience? B) How do you handle when people are busy immersed in their particular religious teachings or whatever?
A couple of things. We always ask the person about their beliefs, religious, or non-religious. Tell me about it. What did you grow up with? Where are you now with that? What should we know that would be helpful for us? Anything that they tell us is what we do. We don’t, again, bring our own stuff into it. If I’m working with an Orthodox Jewish man, I know that I cannot touch him. He would not be comfortable with that.
Knowing the religious and cultural background of somebody is extremely important. That is something that our doulas will ask from the very beginning. What should we know as well as after they die? Do you want to wash the body? Do you want to wash the hands, face, and feet? Tell me about the funeral arrangements. It’s very particular to the person. That part is important.
The deathbed visions.
You don’t see that all the time. Often, you see somebody motioning or talking to somebody who’s not there in the room. I have had people who have told me things. One woman was in a hospice facility when I was visiting her and she was looking out the window and she said to me, “There’s Max.” I look out the window. Of course, I don’t see anything.
We always ask further questions. We never say, “I don’t see anything.” I said to her, “Who’s Max?” She said, “Max is my dog. He’s out there playing. He’s waiting for me.” I came to find out Max had been dead for twenty years. We tell our doulas to tell the family, “Don’t discourage this. Ask more.” I’ve never seen anybody who was not comforted by something they were seeing that could happen.
Nine times out of ten, it’s very calming and peaceful. They often see loved ones who have died. A parent, sometimes a sibling, a child, and usually they’re very comforted by that. They also talk often about going home. “I’m going home. I want to go home.” We see the family say, “You are home. What do you mean you want to go home?”
We tell people, “It’s okay. You don’t have to say, ‘Mom, you are home.’ ‘That’s great, Mom. When are you going home? How do you feel about going home?’” It’s always a very comforting thing. Also, “Where’s my ticket? I have to find my ticket to take the train or get on the plane, or did I pack my suitcase?” It’s very common.
They’re going home. Home is on the other side. This is school.
A lot of times, the family gets distressed. They say, “What do you mean? You are home. Why are you saying you want to go home?”
Not only that, it may not be their background to believe it.
It might not be their spiritual belief.
This is like, “Surprise. Mom is seeing something here.” How has serving as a doula changed your own views of your mortality?
The first thing I tell our trainees is, “This is going to inform you how to live your life differently by working with people who die.” We live differently because we see what’s important. We see what matters in life when you’re talking to somebody who is close to death. Your life, you can’t help but change or absorb. Think about the things that are important.
Everyone who I have seen take their last breath has not been in anguish. That’s not to say that somebody can’t be in pain or suffering. Most of the time, hospice is amazing at pain management. With every drug that we have, they can manage most symptoms. Once in a while, it will be difficult, but most of the time, symptoms are managed.
From what I’ve seen, most people who take their last breath at the end have died very peacefully. There will be times when somebody could be a little bit agitated. Generally, for me, I am not afraid at all to die. Most of us would say that it’s getting there, being in pain or the disease process, or something before taking that last breath. For people, when they are at that stage where they’re taking their last breath, I’ve seen mostly peace. It’s changed my life in many ways. I’m not afraid of it. It’s easy for me to talk about. In our society that has such a difficult time talking about death, the more common we make it, it’s part of life.
I had the same experience because, as our readers know, I had this profound spiritual awakening when my husband died next to me. I’ve communicated with him on the other side and am not afraid of dying, but I’m very conscious about how I live my life. I know that there’s so much more. You and I are both in a very good place about that. It takes away the fear.
Part of what we do as doulas talking about taking away the fear is to educate and inform the family and the person who’s dying as to what is happening. We’re so far removed now in our society from death and dying for many reasons. Some of them are logistical people who live far away. You’re not around when somebody close to you necessarily is dying. People don’t understand the signs and symptoms and so they get terrified.
That death rattle, I hate that word. That’s what they call it. It’s not scary. People have made it to be scary. The body’s breaking down. That’s all that’s happening. When you understand the signs and symptoms and you’re informed about what you’re looking at and what could happen, the apnea, the changes in the breathing pattern, cyanosis.
What is cyanosis?
It’s a bluing or purpling around the fingertips. Sometimes the lips, sometimes the ears. All of this is just the body. The organs are shutting down. The circulatory system is shutting down. That’s the manifestation physically in the body. When we can explain that to the family and they know now what’s happening, the fear and anxiety go away. People are so thankful. That heightened sense of fear dissipates, which is amazing.
I would imagine that it is a very comforting perception to see a person you love so much who is surrounded by love in such kindness through this entire difficult process. I would think that it would provide such solace. When you even go to the funeral, it’s even more of a sense of completion. She’s carrying our story. She’s carrying our mother’s story, our father’s story, whatever. She’s here. She’s a witness. That shows me that’s probably the part of working as a doula. Where people would think it’s depressing, but it’s not at all. You are probably exhilarated by the help you give.
You are helping. You are of service. People are so thankful and so grateful for your help. You’re giving them respite. Go sleep. Go walk outside. Get some sunshine. I’m here. I have this. I’ll call you when you need to come back. Please go take a rest. The education, the legacy work, the talking about touch, reminding people, climb in bed with your husband or your wife who’s dying. You can hold them. You can touch them. You can love them. All of these things, all this information is so rewarding to them.
They are so thankful for the doulas. We feel like maybe we’ve done a little something to help. It’s never about us. We always have to remember this isn’t about us. We don’t want to have expectations, but it’s not depressing at all because you are there on this momentous occasion. Sometimes, it’s very sad, but it is a momentous occasion and it’s an honor for us to be able to be there.
You also give people an opportunity when you encourage them to climb into bed or whatever. You’re giving them permission to do things that they might want to do but they’re afraid of what will people think or whatever. You’re also giving them the opportunity to say whatever it is they need to say to their deceased loved one before they go, which they might not have done.
They don’t think of that at all. Everybody’s so focused on the physical that they forget that they can talk to their loved ones, say goodbye, and tell them how much they love them. “It’s okay for you to go. We’ll be okay here. I’m sorry for something I did to you.” All of those things are important.
That gives such peace to the living.
On both ends.
Janie, one more question. Have end-of-life doulas made inroads in hospitals and hospices?
Yes. Our company, INELDA, has been asked to come and train at about 9 or 10 different hospitals and hospices so that they have a program in-house for end-of-life doulas. The National Hospice and Palliative Care Organization, the NHPCO, has started an end-of-life doula council, of which we are one of many other end-of-life doulas and end-of-life doula trainers to inform hospices and palliative care organizations about the role of end of life doulas and how they can be incorporated within their organizations. Very exciting times. Doulas have come a long way.
It sounds like you’re reeducating people because what you’re doing is not a competition. It’s a cooperation.
It fits within the hospital or hospice.
Thank you so much for that. How do people contact you and how do people contact INELDA?
Our website is www.INELDA.org. We have tons of information on our website, not only where our training is. We have articles and blogs every month we come out with a newsletter. Sign up for our newsletter. You’ll be informed of everything that we’re doing. I am on there. You’ll see a picture of me. You can find me at Janie@INELDA.org. There’s a ton of information there.
If they want you, they go right through INELDA. Everyone who read this, let Janie know that you found out about it through the show. That would be wonderful. You, of all people, what is your tip for finding joy in life?
Being of service. In our training, we talk a lot about self-care for ourselves as doula because we absorb a lot of pain and grief. One of the self-care plans for finding joy in life that I always take away from my training weekends is to do three things in your day of kindness. It can be as simple as smiling at somebody, saying thank you, or complimenting somebody. If you can be mindful to do some act of kindness every day, that uplifts your life and brings you joy.
We can all take that advice to heart. That’s wonderful. Thank you, Janie. You’re welcome. It’s such an honor and privilege to speak with you. You’ve shed a lot of light and comfort on a difficult subject. People often talk about finding their passion that is their sole purpose and it is apparent that you found yours. Thank you from all of our hearts for an invaluable discussion that is surely going to get many of our loving readers thinking in new ways, not only about death but also about their lives. As I like to say, to be continued. Bye for now.