interview with a death doula — a person who helps support you at the end of your life

by Alison Green on June 4, 2024

Have you ever heard of a Death Doula? I hadn’t, so when I had the opportunity to ask Death Doula Sharon Crowell about her work, I took it! Here’s our conversation.

What does a Death Doula do?

A Death Doula provides support to a dying person and his or her family/caregiver. Recognizing that death is more than a medical or legal event, the Death Doula performs the often over-looked role of supporting the dying person in identifying their values, beliefs, and important life experiences. The Doula ensures that these are recognized through legacy projects and are reflected in decisions and conditions happening during the last months, weeks, or days of life. The Death Doula will often meet with family members several weeks after the client’s death to talk about how they felt about their loved one’s final days – what went well, what may feel incomplete, and to help provide closure. They do not provide grief counseling or spiritual guidance, but rather stay present to provide space for the dying process to unfold.

In terms of actual tasks, those can vary widely based on the client’s needs. Doulas can help facilitate conversations among family members regarding their loved one’s final wishes. They may help the client to gather recipes, songs, photo collections to leave behind to future generations. The Doula may provide vigil support at the bedside, assist in making calls or greeting visitors, or help plan a memorial service. The list is as unique as the person requesting Death Doula support. At one time I was called in as a Doula after the death. The patient had a sudden heart attack and died in the ambulance on the way to the ER. The spouse requested that I meet her in the ER and to simply sit with her and her husband as she said prayers.

What is a legacy project?

A legacy project is a project that a dying person creates that allows them to be remembered in a special way.If the client has been an excellent cook, the legacy project may be a collection of best loved recipes that can be distributed to friends and loved ones. Recorded interviews that touch on important aspects of the person’s life, photo albums that can be reproduced, collections of music that the client loved or that represented milestones in their life can all be considered as legacy projects. For clients who may be dying at a young age, letters to children or grandchildren to be opened on future special days – graduation, marriage, birth of first child, etc. are sometimes done. In one case, a talented seamstress took all of her friend’s blue jeans after she had died and created small pillows from the denim material to give to a group of friends that the client had identified. Not everyone wants to do something like this, but it is always a possibility. Simply asking “how do you want to be remembered after you have died?” or “what would you like to leave behind for friends and loved ones?’ can open the conversation about legacy projects.

Do people generally know what they want their end of life to look like or is it part of the role to help them figure it out?

In general, most people have not given much thought to planning for their end of life beyond attending to practical measures such as creating an advanced directive or a will. Those are obviously very important and everyone should have those. Beyond those practical measures, however, there is an entire array of decisions that can be made. Our local library recently had a workshop on writing your own eulogy, something most people have never given any thought to. There are a large number of burial options other than burial in the ground or cremation that most people are not aware of. Identifying who you want to have with you at the end of life (and, perhaps more importantly, who you do NOT want with you) is so important. I could go on and on. A lot of people will say something like, “Well, I don’t care about that, I will be dead” or “My children will take care of all of that.” But the more decisions that are made and shared with caretakers or loved ones, the easier it is on everyone in the final days. We plan for births, weddings, retirements, and other life milestones. Death is another transition or milestone, yet we shy away from planning for it as if it is something to be feared and not the opportunity to recognize a unique life well lived. A life whose values are expressed in their death process. Once the person has died, those remaining can take comfort in knowing that they did everything the way their loved one would have wanted.

If someone hires a Doula, it is likely that they have given some thought to these questions already. But you are exactly right. Depending upon how close to death the client is, a Doula can help clarify these wishes and facilitate conversation between the client and family members or friends to ensure that everyone understands what the client wants, even if it is something they would not choose for themselves. Like hospice, engaging a Doula early on when a terminal diagnosis has been given can allow the time for all of these issues to be thoughtfully discussed and communicated. It also allows time for a relationship to develop between the client and caregivers.

How did you get into doing this work?

I am a licensed acupuncturist and several years ago, two of my clients were diagnosed with the same terminal illness. The clients asked if I would come to see them in their homes once they were unable to make the trip to my office. The difference in the atmosphere between the two homes was startling. In one case, family members caring for the client were calm and knowledgeable about the dying process. They had engaged hospice early on and formed relationships with the caregivers. The client was comfortable in a room with the windows open to spring birdsong and soft music playing. The room was free of clutter and medical-related supplies. There were photos of family members and travel that the client had been on around the room. The entire house felt so peaceful. In the other case, the atmosphere was one of chaos and confusion. Yellow sticky notes were pasted on the wall around the bed, which was full of medical supplies. The primary caregiver was fearful to the point of appearing angry and resentful of the role. It was a completely different atmosphere.

That experience left me wondering what I could do to ensure that people had the experience of the first client and not the second client. I poked around on the internet and found out that there was this thing called a Death Doula. I immediately signed up for the weekend long training.

What do you like about doing it?

It is an immense privilege to be with someone during this sacred time. It feels like a valuable service to be able to offer a grounding, stable presence in the midst of the emotions that can get stirred up during the dying process – fear, uncertainty, grief, loss, etc. To simply sit in the middle of all of it and stay present with the client allows the loved ones some space to go through their own process. I also think it is important work to acknowledge the end of a life well lived. We celebrate other transitions in life – birth, graduations, marriages, retirements. Death is another transition and a time to celebrate the unique life of an individual, a life that will never be repeated.

What have you learned from this work?

Even though we know that we are all going to die someday, people are reluctant to address or to talk about end of life wishes with their loved ones. The more that these discussions start when everyone is healthy, the easier (although it is never easy) it is on loved ones who will be with the dying individual. The best decisions are not made in the midst of panic but are made from a position of knowing that one is providing the support measures that reflect the values, beliefs, and desires of the dying person.

Hospice is best called in earlier rather than later. Hospice is a whole other subject, but it can be engaged when an individual is given six months or less to live. I recently read a statistic that on the average people call for hospice care three days before the client dies. Of course, no one can predict the exact time or death. The point is, people delay getting hospice care when it can be such a source of information and support. There is a feeling that calling hospice means that someone has “given up.” Hospice is simply the next step in the trajectory of someone with a terminal illness.

My mom, who is terminally ill, has talked a lot about how surprised people are by how openly she discusses her situation. Some people don’t know what to say because they’re not used to people discussing their own death so freely, and others seem to really like that she’s comfortable talking about it. Why are most of us so weird about death? Is it because in modern life, we have incredibly limited experience being around it, if we’re lucky?

I think that people in America see death as a failure. Look at the language we use – “she lost her battle with cancer.” “He bravely fought his disease for many years.” Death is not something that needs to be denied or fought against. It is a natural part of life. I am not speaking here of sudden tragic deaths such as murders or car accidents. That of course is a different situation entirely.

I also think that there is such an element of fear around death as no one really knows what happens when or after we physically die. There are reports of near-death experiences and from people who were clinically dead before being brought back to life. These reports are very similar. They are, however, for the most part reported by people from the same cultural background. We like to know what’s next and are uncomfortable sitting in the unknowing space that is end-of-life.

Your mother’s frank speaking about her own imminent death is of so much value to so many people. To hear her discuss her own experience in an almost matter of fact way is allowing death to be normalized for people who are reluctant to talk about it. She has shared her experience in such a beautiful and healthy manner. By example, she is also emphasizing the value in living each day to its fullest in the face of a terminal diagnosis. I admire her so much.

You’re going to be my mom’s Doula when the time comes. (Thank you!) What advice do you have for families when a loved one is working with a Doula? What should we know and expect?

The Doula’s role is to make sure that the client’s values and expressed desires are upheld during the dying process. A Doula does not provide medical, legal, financial, or spiritual support/advice. Having said that, every Doula comes to the position with different skills and interests. Some enjoy working with the client on a legacy project, while others are more skilled with the physical end of life process, sitting vigil and explaining to family and caregivers the process of dying. My personal background is as a nurse and acupuncturist. I can help family caregivers understand the medical interventions. (When you are under stress, you have to hear things six times for it to sink in. So even when a medical provider has explained something, the caregiver needs to hear it several times to understand). I also use my acupuncture skills by applying gentle acupressure to points that allow relief from pain and anxiety.

It can be tricky when the family hires the Death Doula rather than the client. This usually happens when end of life is imminent, and often after the patient is able to clearly state their wishes.

The client or caregiver should feel free to ask a Doula about the particular skill set they bring to the role to make sure that what the Doula can offer is suited to the client’s needs.

How does someone find a Death Doula?

Right now, there is no national board or certification process for Death Doulas. Given the vast array of support measures that a Doula can offer, I personally think this is a good thing. It allows the Doula to be responsive to the particular needs of a client and/or the family and loved ones.

The three organizations that have an established reputation for training Death Doulas, and who list their graduates on their websites, include:
The International End of Life Doula Association (INELDA)
The University of Vermont Death Doula Training Program
Doula Givers

A quick google search shows many more training offerings. I personally am not familiar with any of them, but the three listed above have an established track record. Word of mouth is also a good way to find people. Many hospices have a list of Death Doulas to whom they refer patients, as do programs such as Inova’s Life With Cancer.

You can get in touch with Sharon at sharon@acupunctureinva.com or through her website (currently being updated).

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{ 127 comments }

{ 127 comments… read them below }

  1. WellRed*

    Important work. Death comes for us all eventually. Stay strong Alison, sending you and your mom best wishes.

  2. Temperance*

    What a beautiful and important service you provide, Sharon.

    Alison, I hope I’m not overstepping by saying that your mother is an amazing woman for so openly advocating for death with dignity and speaking so freely. So are you, for sharing all this while dealing with the impending loss.

  3. Czhorat*

    I applaud you for taking on this important work.

    We celebrate life at its beginning and at so many milestones, but are so uncomfortable when it comes to reflecting on life at the end. I’m glad there are people such as yourself taking on this task.

  5. Blackbeard*

    I did not know about your mom. So sorry to hear that. Wish you lots of love and peace in this difficult moment.

  6. Khatul Madame*

    I like the term “End of Life Doula” better.
    I would be interested to learn how this works in case of Alzheimer patients nearing the end.

    1. Harried HR*

      May I ask why… a typical Doula (Childbirth) is not called a Beginning of Life Doula ?

      1. BubbleTea*

        End of life doula highlights it’s not just the day or week of death but can be months of care and support. Birth doulas often do some work before and after the actual birth event, but the process of birthing doesn’t take as long as the process of dying.

      2. SoloKid*

        There, the doula’s role is to support the mother, who is not at the beginning of her life.
        /s, kind of

  7. IHaveKittens*

    I have a friend who is a Death Doula. I greatly respect her for this work, but I have noticed that it seems to have changed her personality a lot. I worry that it might not be the best choice for her, but I know it is extremely important work that she believes in with her whole heart.

    1. Hlao-roo*

      If your comfortable sharing, I’m curious how your friend’s personality has changed (for example, was she a generally bubbly person who has become graver and more serious?). I definitely understand if you’d rather not elaborate for privacy reasons.

      1. IHaveKittens*

        She has become much more secretive and solitary. Her world seems to have shrunk down to just her husband and their pets. She refuses any social interactions, has withdrawn from all social media, and never wants to communicate. I miss my friend.

        1. Hlao-roo*

          Thanks for sharing and I’m sorry to hear that. That’s a tough change to experience in a friend :(

    2. Code three*

      that’s the reality of this kind of work sometimes –you are changed by it. I’m not the same person I was before I started working in emergency services, but I wouldn’t trade it for the world. It’s important work and I’m honored to be doing it, like your friend and Sharon from the interview. I’m kind of going against the grain of society here I know but I think it’s okay to live a life of service, given freely, and to sometimes even make a choice to think of yourself second.
      Anyway, you can voice your concerns to your friends, but it’s possible that the work is more important to her.

  8. Tio*

    I really like some of the principles set out here. I’ve been thinking about what we leave behind a lot lately (diagnosed with a long term illness myself) and it’s interesting to think about

    1. Sloanicota*

      I would love to believe I, and the people I love, could benefit from something like this. However, in my limited experience so far, kind of like childbirth, the process seems to rarely go the way we would hope. Most of my loved ones have ended up having a more … medicalized death (and childbirth) than they wished or intended. I’d like to know what percentage of people these days are able to peacefully pass at home the way we all dream of, and the various barriers to doing so. I will have to do some more research to understand.

      1. Loredena*

        My father passed at home We likely waited too long to call in hospice but they were helpful in the process and keeping him comfortable towards the end

  9. Alli*

    I had never heard the term death doula until I read the novel ‘The Book of 2 Ways’ by Jodi Picoult. What a wonderful (and challenging!) service to provide.

    1. YepYepYep*

      My first introduction to a Death Doula was the book “The Collected Regrets of Clover” by Mikki Brammer!

  10. Email (Optional)*

    A musician I love has spoken so much about death doulas, to the point that I’ve been considering it as a second-act career ever since my MIL passed. Thank you so much for this, these folks do incredible, important and beautiful work!

    1. Sloanicota*

      I’ve got to assume there’s certain personalities types or inclinations that are a better fit with this type of work than others. While most people no doubt have some strengths they could bring, I would assume it’s a better calling for people who are extremely patient and calm?

      1. Goldenrod*

        And also people who are caring and empathetic, but with firm boundaries and the ability to detach.

  11. Jennifer Strange*

    I have an acquaintance who does (or at least did) this as well. I admit I’m terrified of death, and I sometimes have anxiety/panic related issues just thinking about it. Just knowing these services exist really helps, so I appreciate the folks who offer them.

  12. Richard Hershberger*

    It looks to me like this is a variant on what a good clergy person does. Of course there are a lot of bad clergy out there, but I wonder if the death duella isn’t a response to the decline of the church in society.

    My mother died last April. My observation of the American way of dying is that the second most important thing (the first being, as always, money) is strong patient advocacy. In Mom’s case, money was not an issue. But despite this, the process was always on the precipice of turning into a horror show. Only the constant presence of a string of family and friends, all highly educated with ample social capital and willing to use it, prevented this. By way of example, when she was transferred from the hospital to hospice care at the skilled nursing facility attached to the retirement where she had lived for a quarter of a century. they wanted to start her on physical and occupational therapy. This for a woman who was explicitly there for palliative care only, and for whom a mere touch was extremely painful. Why did they want to torture a dying woman? My money is on scoring some CPT codes to bill Medicare. I was able to prevent that, but I shouldn’t have had to. And there are versions of my story from all the friends and family who watched over her. Am I angry? You bet I am! But the bigger picture is that I assume the process routinely is a horror show for persons without friends and family able to prevent it.

    So my point here is that based on my experience, patient advocacy is what is needed most. Can you buy this? I don’t know. Fortunately, we had that string of friends and family ready to spring into action.

    1. Susan Calvin*

      On one hand, I would say you’re right, but as a non-religious person, who hasn’t been closely acquainted with any clergyperson for 20+ year, Ialso strongly feel that this kind of “un-bundling” is a net-positive development.

      2. Excel Gardener*

        It’s positive, but only if we develop a culture where death doulas or similar services become normalized. Sadly, what often seems to happen is there’s a void left by religion and only people who are proactive and thoughtful are able to fill it, but most people don’t have the social capital, education, and/or time to do so and so they have nothing to fill that void. (I say this all as a non-religious person)

    2. ThatGirl*

      Mmm, my dad was a pastor for many years, and I don’t recall him ever advocating for the dying the way that Sharon describes. Clergy cannot and should not be 1-on-1 patient care advocates.

      Can you buy patient advocacy? I mean, sure, in that you can pay for the services of a death doula who will serve that function among others. Doesn’t mean that’s the only way to get it.

      1. Annie*

        Such a strong opinion.

        I have personally had wonderful experiences with clergypeople in this context. I agree with Richard Hershberger that there are some similarities. It will not be for everybody or even for most people, but this kind of comment-section absolutism really grinds my gears.

        1. allathian*

          Indeed. I’m in Finland, and all hospitals here have chaplains. Most of them are Lutheran, but they will listen to the patient and won’t force “god talk” on anyone (if they tried to force prayer on an atheist, they’d be fired). They can also help religious non-Lutheran patients get in touch with their clergy. When my dad was in hospital a few years ago, he was in the same room with a Muslim who was visited daily by an Imam.

          That said, it seems to me that the scope of work of a death doula is greater than that of a clergyperson.

      3. Kitry*

        What an odd thing to say. I’m not religious myself, but my grandmother was quite devout, and her pastor did many of these things for her at the end of her life.

    4. NobodyHasTimeForThis*

      This is also not what hospice should look like. I have seen the difference between services provided by Hospice and “hospice facilities” (capitalization intentional) Hospice meant that my dad got to stay where he was in assisted living and they advocated for him. He preferred to sleep on the floor, the facility wanted to force him into a med bed, Hospice intervened and provided floor bedding to protect the carpet and assisted with procedures that were above assisted living level. They advocated for the palliative meds and the additional communication with family and doctors.

      OTOH I had a friend whose mom was in a “hospice” facility and it was really just a nursing home with a DNR order. They did not do the patient advocacy. They were just another overworked understaffed nursing home.

      1. Sloanicota*

        My understanding is that these days, most hospice of the kind I actually picture (focused on pain relief and not on extending life) is through “hospice at home” services.

        1. ThatGirl*

          Not to sound argumentative, but hospice is explicitly not about extending life, but making the end of life as quality and comfortable as possible. Pain relief is certainly part of that, and hospice services can take place in a variety of settings.

          1. Sloanicota*

            I’m responding to the comment above, where they found that hospice was basically an understaffed nursing home with DNR policies. It’s just my own anecdote but the people I know who have used hospice successfully used “hospice at home” – it wasn’t a facility at all, which I initially was confused by since I thought hospice was a place (probably just because of the similarity to the word hospital, which is a place).

    5. Excel Gardener*

      Sadly I’ve also heard many anecdotes of the family making things worse. For example, children or spouses focusing on length of life rather than quality of life for the dying individual. I think this too is due to our culture not thinking about or talking about death enough.

      1. OT*

        I won’t repeat everything I said in a reply to this commenter, but I agree, and palliative occupational therapy very much is aimed at quality of life. We’re not medics – we’re therapists.

    6. OT*

      I’m so sorry for your loss of your mother, and I’m sorry that you experienced so many difficulties around her death. It sounds truly awful. I’m glad you and your friends/family were there to advocate for your mother.

      I wanted to note that palliative occupational therapy is a recognised discipline within OT – as OTs our aim is to enable clients to participate in the activities that are important to them or that they need to be able do, and we can work with terminal clients to continue to have meaningful activities in their life.

      But I want to emphasise that I’m not dismissing your experience or opinions, nor saying you/your mother should have excepted OT – you knew your mother and the situation your were all in, and I do not. I am also in a different continent, culture and health system. I merely share this for the sake of information both for yourself and for other readers. Interestingly, I expect the skills of a good clergyperson, death doula or palliative OT might have significant overlap.

      1. Alpaca Bag*

        My daughter had brain cancer and chose hospice care, PT, and OT after she lost the use of the left side of her body. Those wonderful people were amazing, and enabled her to be able to go home and spend a couple more days with her beloved cat. That was all she wanted, and she got it. <3

    7. Devo Forevo*

      You can’t buy patient advocacy, but you can plan with the patient before it gets to the point of hospice care. My dad and I worked with a gerontologist/psychiatrist to prepare a “natural dying living will,” which let him express his wishes about how he would like a huge range of situations handled before his cognitive and physical decline kicked into high gear. We had a copy filed with his hospital and with his PCP along with the DNR paperwork and it made the actual decision making at the end MUCH easier. We had his wishes already outlined for the questions that came up and were able to act without getting stuck in guilt and arguments.

    8. MirandaTempest*

      One of the differences I’ve seen between death doulas, clergy of all religions, and hospital chaplains is how long the involvement is and how personalized and in-depth the service. Like the difference between a childbirth doula and your obgyn. The doula comes to your home, is hopefully very patient and spends a lot of time with you, answering questions, holding space for your emotions, and helping with practical tasks. Clergy and chaplains do some of these things, but not all, and generally have a lot more clients/parishoners to be with.

  13. Aspiring Chicken Lady*

    I am in a quilting community in which some of the members happen to be doulas or otherwise connected with the end of life process – like making memory quilts and burial quilts.
    My experiences with death have often been rife with disassociation and shock. The idea that these kind friends could help in the transition calms me so.

  14. Ultimate Facepalm*

    What a beautiful service to provide. I admire and respect this so much. <3

  15. old curmudgeon*

    My mom (who resembled Alison’s mom in many ways) died in 1997, long before the concept of Death Doulas existed, but I think she must have somehow channeled the philosophy for herself.

    She wrote her own obituary, which started with the words “FirstName LastName died on Date, after living fully with cancer for 7 1/2 years.” She didn’t sugar-coat the concept by using phrases “passed away” or “went to heaven” – she used the verb “died,” because it’s death, not passing or ascending. And she didn’t “fight” cancer, nor did she “lose her battle” with cancer – she LIVED with cancer, lived fully and joyfully and zestfully, for the entire time between her diagnosis and her death.

    Mom had spent her professional life as a nurse and nursing instructor, but in retirement, she embraced her creative side by taking art and journaling classes. She created illustrated journals to show her childhood growing up on a dairy farm in upstate New York, so that the grandchildren she knew she wouldn’t ever meet would still be able to get a glimpse of the person their grandmother was. She also journaled throughout her experience living fully (traveling to visit every relative across the country, going on Elder Hostel trips around the world, van-camping across Alaska, browbeating oncologists into signing off on her solo travels, etc.) with cancer for those 7 1/2 years. Those journals are still stored upstairs from where I am sitting right now, and I feel her beside me when I reread them.

    My mother provided a master class in how to approach death, despite not having a Death Doula to guide her, but I suspect most of us aren’t prepared to tackle the experience at that level. And when I think back to how much her approach (which was really being her own Death Doula) impacted both her and those of us who loved her, it provides a great object lesson in how important this avocation really is.

    Thanks for sharing this, Alison.

    1. Ghostess*

      Your mom sounds like an incredible human. The illustrated journals! I am sorry for your loss, but my heart is full from everything you shared about her.

    2. Dark Macadamia*

      I really love this. My mom died of cancer and I’ve always been uncomfortable with all the courageous fight/lost the battle type language. Died after living with cancer is such a better way to express it.

  16. Anon for this*

    Thank you for sharing all of this, Alison — I admire how present you and your mom are to this end of life phase. Sending light to both of you. Sharon, thank you for doing this so-important thing.

  17. urguncle*

    I made the comment after my experience with a doula that I wish we had doulas for every hard thing I’ve had to do.

    1. Elsewise*

      I remember reading an article about a year or so ago about abortion doulas! As someone who’s never had a baby or an abortion, or died, I’ve never worked with a doula, but I’ve known a few people in the profession and I think it’s wonderful to have the option to have someone with you during those moments.

      1. Moo*

        I have never heard of this before but came to the comments to see if death doulas worked with families who are ending pregnancies. I’m glad there are abortion doulas out there, but wish they were more well-known. I think it would have helped me greatly last year when we had to say goodbye to my very wanted son.

  19. Drifter*

    I have a friend who is getting her Death Doula certification now and I was working with her to put my end of life plans in place (I’m not currently dying) and out of the blue my dad got really sick and died on April 25. As another person commented his death process was verging on becoming a horror show. Since I had been working with her I knew things to ask him that I never would have thought about. My mom was in denial about a lot of stuff regarding dads death, so having a person who was there for me to talk to was amazing. I think this is such a valuable service and I wish more people knew about it and understood what it was.

    1. Expelliarmus*

      Sorry to hear about your dad, Drifter. I’m glad that you were able to benefit from this valuable service though.

  20. Percy Weasley*

    Deepak Chopra’s book Life After Death is a fascinating, cross-cultural look at near death experiences.

  21. RMNPgirl*

    This is fascinating! I first heard about Death Doulas when one was introduced on 9-1-1 last year and briefly dated a main character. Getting more information on what exactly they do and what it’s like is great.

    1. Reluctant Mezzo*

      One of the nurses on Call the Midwife basically left to become a death doula/hospice nurse after the episode with Chumley’s mother.

  22. Cubicles & Chimeras*

    I learned about this when I was reading Hari Ziyad’s Black Boy Out of Time, and reading more about their life online in some of their interviews. I wish we had something like this when my grandmother died, so my aunts and uncles could have had some unity and cohesion when things became so fraught with emotions and the many opinions that come from having so many kids who wanted to make their mom’s end of life the best.

  23. Katydid*

    What a beautiful service you provide. I was a hospice volunteer for 3 years and some of it was similar. I was very close to the family I worked with and it was very life changing training for me. Now I am a volunteer EMT and often we are there after the fact and I want to emphasize the need for people to be open about their wishes and be as clear as possible, it just makes everything go so much smoother for all who are there. My Grandfather is 98 and is very open about his wishes and his plans. All of his furniture has been marked for people who want it, he has his urn purchased etc. and although it will still be very hard when the time comes, it is good to know he is prepared.

  24. JustTea*

    I didn’t know this was a thing, but so amazing that this exists. What a nice interview and very educational. It must be very special to help people in those times. Thank you for sharing.

  25. Lumos*

    An extremely close friend of mine is currently working with a Death Doula to manage her terminal illness. Thank you for all that you do and for sharing more information about it.

  27. Jean (just Jean)*

    Thank you so much for sharing this interview. I can feel people exhaling all over the internet as they learn ways to resist (at least partially) the current “American way of dying” (words from Richard Hershberger, above) aka a horror show waiting to happen. Even more good energy will be released as some readers decide to become death doulas, or hospice volunteers.

    Alison, I also wish your mom, you, and your family moral support and peace during your mom’s terminal illness.

  28. Irish Teacher.*

    This is extremely interesting. Great interview.

    And as a history teacher (and history buff), I have to say I love the idea of legacy projects. One thing I think an awful pity is how much information about ordinary people we’ve lost from much, if not most, of history. Often we have the law codes and we know about the major events like battles, but…we don’t often know how these things played out in reality.

    Like I read a comment about Aoife and Strongbow (long story short, her father was losing his kingdom so he did a deal with the Anglo-Norman, Strongbow, that Strongbow would bring troops to Ireland to support him and then would marry Aoife and they would rule after his death) about how she must have agreed because Celtic Ireland did not practice arranged marriages and perhaps that is true. It’s quite possible she wanted her family’s kingdom restored to them and to inherit once he died and she might have thought marriage to a stranger a fair price for that. (Hey, she may even have thought it an advantage as she may have felt a foreign husband from a very different culture with little understanding of a Celtic tuatha, would defer to her and she would be the real power.) But…I wouldn’t say it is certain. A father can have a lot of power over his children, regardless of what the laws say and when that father is also the king…well, it’s not hard to imagine a situation where she was guilted into it.

    And it’s not just the powerful and significant. How ordinary people lived, what they thought about major events, etc is fascinating and lost for much of history.

    A legacy project would be lovely for friends and family but it also provides information for the future, both for people like future historians and also for later generations to see what grandma’s grandma liked to do or cook or listen to.

  29. Mimmy*

    This is very informative, thank you Alison. I strongly believe in making the end of life as comforting and peaceful as possible, both for the dying person and for their loved ones.

  30. jasmine*

    The way Americans talk about (or, to be more accurate, avoid talking about) death is sort of fascinating to me. I mentioned to a coworker once we were visiting an elderly family member and she was talking about a preference she had for her death (it’s been a while, I don’t remember the details anymore) and my coworker found it amusing and a little strange that she just talked about her own death. But to me, it was incredibly normal. Even among people who aren’t that old. I know my dad wants to be buried in a coffin, and my sisters know I absolutely do not.

    1. jasmine*

      Religion is more intertwined with everyday life in my culture, I wonder if that feeling of certainty about what happens after death has anything to do with it.

    2. Esmae*

      As a culture, we’re very uncomfortable with death. My dad was an emergency room doctor, so I grew up around a lot of medical talk and my immediate family is unusually comfortable talking about death. I’m constantly reminded of just how unusual that is.

      1. Angstrom*

        In our society one can grow to adulthood and never see a dead person. That is highly unusual if you look across history and cultures. It’s no wonder that we fear something that is so strange to us.
        One of the best things that happened to me when I was young was witnessing a peaceful death.

        1. MM*

          I agree. My dad died in home hospice, and when the nurse came to confirm his death I had to lift his body up for her to get the morphine drip out. I don’t necessarily want to be handling corpses every day, but I think it’s good that I’ve done it for a loved one once. It’s important to be exposed to death while you’re living. And who would I want handling him if not me? Similar to how it works in Islam, where the family members wash and prepare the body.

          After his death I actually started contemplating death doula as a possible alternative career option if my current trajectory doesn’t work out.

    3. Excel Gardener*

      I feel like it’s because we’re (thankfully) not exposed to much death in modern societies, and thus not used to talking about it. I’m 30 and I still haven’t experience a close friend of family member dying (a few grandparents, but none I was personally close to), and I think that’s an increasingly common experience.

      1. jasmine*

        See, I get what you’re saying here, but I don’t know if that’s true. Everyone still dies. They die older, but the quantity of people to die hasn’t decreased.

        2. Frank Doyle*

          That may be true (or it may not), but the “dying older” part is what keeps us from experiencing death. People don’t experience siblings or classmates dying as much as they used to. People don’t experience their parents dying as early in their own lives as they used to.

    4. AMT*

      And that makes it so messy when people are actually in the process of death! I used to work on a geriatric unit at a hospital. People think they don’t need to worry about death, illness, or dementia until those things are actually happening, and then it’s a big scramble to get together resources and paperwork. Then the relatives are all at each other’s throats and it turns into a low-budget version of Knives Out. If you get over the fear and social taboos of talking about death early, no one has to argue over intubation and antique lamps when you’re hopped up on painkillers and struggling to breathe.

      1. Angstrom*

        It’s heartbreaking when the patient has a DNR and wants to go quietly and some of the relatives are screaming at the staff for full interventions.

    5. stratospherica*

      The UK is quite similar (although not as extreme in its death denial) to the US, and it was only recently that I’ve really appreciated my mother’s openness about how she wants me to take care of her when she’s gone. Whenever she told me about her wishes I used to shut her down because I didn’t want to think about it, but it’s actually very comforting to think that I know what she wants. She wants to be cremated, and for me and my brother to take her ashes with us and spread a little bit of them where we travel.

      It’s also helped me understand what I want (cover me in a shroud and chuck me in the ground; let me give back to the earth that has provided me with so much).

  31. Shan*

    My dad died via MAID six months ago today (he had Alzheimer’s), and it would have been really nice to have the assistance of a death doula for it. The three month window between approval and the actual procedure was this weird limbo period, and then the procedure itself is so surreal and goes against every instinct you have, even if rationally you know it’s a good thing. I thought I was prepared, but I was so focused on my dad being at peace that I somehow forgot think about “after.” I hadn’t taken into account that I’d then immediately be having to emotionally support my mom instead of getting a chance to grieve. Nothing went horribly wrong, but she did things like quickly donate a bunch of his stuff that I wish we’d had the chance to go through with clearer heads. Just having someone to talk to in the weeks prior and then debrief with after would have been so helpful.

    Thanks for sharing, Sharon! It seems like a wonderful service you provide.

    1. Golden*

      I want to know this too! Is it covered by insurance? How does the billing typically work (like hourly while the client is living or a lump sum out of the estate after they pass)?

    2. Ringo*

      I considered becoming a death doula somewhat recently and discovered that most doulas (at least in my part of Canada) don’t actually charge for their services. The ones that do mostly have a background in therapy or grief counselling, and are therefore more often covered by insurance.

  33. RCB*

    I appreciate the mention of how Hospice can (and should) be started earlier than most peope realize. A lot of people think Hospice is just nurses for the last few weeks of someone’s life, but they are a great resource for the final months/year(s) of someone’s life to help you plan for everything and be fully ready when you do need the nurses for the final stuff. Contact them as soon as possible, if it is too early they’ll tell you, but I think you’ll be surprised (and relieved) at how early they can be of assistance.

  34. Pizza Rat*

    I say this as a gerontologist with another master’s in hospital administration – this work is absolutely critical, but I think we need to be VERY clear about the fact that most people do it on a volunteer basis — and that those who do make money still don’t make enough money (usually) to sustain a living. That’s why you see so often that death doulas are also nurses, holistic medicine practitioners, or otherwise have other “hustles” that supplement their work in this space. I’m certainly not trying to discourage people from pursuing it if they’re interested – helping people at the end of life is a calling – but to go in with eyes wide open about the fact that for the vast majority of people, it’s not a massive payday, or even a payday at all.

  35. Full time reader, part time commenter*

    How does one bill for services as a death doula? What is the average compensation?

  37. BW*

    A friend of a friend has started a kickstarter for “How Not to Say Dumb Shit” cards, also known as Cancer Connection Cards. They had cancer, and they were amazed at the stupid stuff people said to them. So the cards say things like, “Instead of saying X, say Y.” I’ve ordered a set. The cards also seem appropriate for saying the right thing to people who are dying.

    If you’re interested. I hope it’s OK to post this.

    https://www.kickstarter.com/projects/hntsds/cancer-connection-cards

  38. ldub*

    Sharon, thank you so much for this. If you are answering here, could you share whether being a death doula could be something that one could do on top of a full time job? What’s the schedule/time commitment you usually offer clients?

  39. Nonsense*

    Ok, no, I have to seriously disagree with those last paragraphs – a national certification board is a good thing. Certification boards enforce standards of training and ethics, which is always necessary but particularly so when dealing with a vulnerable population like the dying. A national board also provides an easier way to lodge complaints and concerns, and to confirm the credentials of the person you’re hiring. Enforcing a standard of ethical behavior would not inhibit the unique interactions that come from dealing with such a personal issue, and will in fact provide a measure of protection for the provider as well because there would be clearly defined set of expectations and responsibilities of the provider.

    A national certification only inhibits your interactions with clients if you’re already straddling the line of professionalism to start

    1. anon for this*

      Must agree. Am reminded of the difference in how midwifery is much better regulated in Canada relative to the United States. Far more pseudoscience in the U.S., and many more horror stories about underqualified people trying to assist with births.

    2. Cthulhu's Librarian*

      Agreed. For all the wonderful persons doing this for all the right reasons out there, I’m sure there are also people doing this to accomplish scams and predatory behavior (I know my family encountered that with an individual who spent the dying months with someone, “representing” their interests, but somehow ended up with a verbal agreement the attendant could have the house and evict the dying person’s child).

      Certifications, licenses, and regulations are good things, especially around vulnerable populations.

    3. BubbleTea*

      Yes and no. I’m in a profession that has recently considered having a certification and decided against it, because there are so many routes into the field and so many roles that fit naturally with the relevant skills and expertise. Establishing a formal route and requirements to be registered would shut a lot of people out who are doing excellent, important work.

      1. Nonsense*

        Not necessarily. I’m in civil engineering, which has two main levels of licensing: Engineer in Training, and Professional Engineer. To become an Engineer in Training, one must pass the Fundamentals of Engineering exam and have either a) an engineering degree from an accredited college or have at least 4 years of engineering work experience under a licensed Professional Engineer. Now, if you use the second route you will have to jump through a few hoops to prove your experience is valid and the requirements of such tend to be state-dependent, but it is doable.

        A good certification board will recognize that there are several paths to end up at the same place and will reflect that in how they apply their standards. A caveat for worked experience in lieu of college education takes more effort on the part of all parties, reviewer and applicant, but will ultimately result in the same base level standard.

    4. Katie A*

      Certification has downsides even if the certification is based on reasonable standards (which it isn’t guaranteed to be). It increases the costs to start in a profession, increases costs to people who want to hire someone to perform a service, and makes the service overall less available since fewer people will be able to go in to the profession. It also gives power to specific group of people to define the profession, and that can be a bad thing, especially for something as personal as this.

      We can have certifications or credentials that people can get without legally requiring them to get some of the benefits of certifications without as many of the downsides.

      Certification can be very valuable, but as a society we should consider the downsides before setting up new occupational licensing or certification requirements. It should only be done when the profession involved has a high risk beyond the normal risk of paying someone to perform a service for you. Doctors? Absolutely. Hair braiders, florists, interior designers? Not necessary, but some states do have occupational licensing requirements for them, which is unfortunate.

  40. sagewhiz*

    The legacy aspect of this work is particularly important, for the person who is dying, for those who remain, and for descendants in the future.

    As a professional personal historian since virtually the beginning of the profession and teacher of life-writin, all my client interviews and workshops include what is known as an Ethical Will, which records the person’s values, beliefs, and important lessons from life.

    I’ve also led obituary workshops. At first some people are a little unsettled by the concept, but by the end of a few hours everyone revels in the joy of having shared what they find important to have posted after their passing. (I also had the pleasure, years ago, of helping judge the best obituaries of the year—oh my gosh some were utterly hilarious!)

    I urge everyone to do this. Search “professional personal historian” to find people in your area. (And of course vet them!) Those trained through the Birren Center for Autobiographical Studies are to be highly trusted. (I also urge you to skip the “fill-in-the-blank” life-writing books—those are either quickly forgotten or intimidate the recipient, and are almost never completed.)

    It isn’t inexpensive to hire a professional, but it’s not an expense, it’s an investment in the future!

    1. münchner kindl*

      The Legacy part reminded me of the Memory books (one example https://www.memorybookforafrica.org/) which were started when so many young mothers (parents) were diagnosed as having AIDS and knew they wouldn’t live to see their children grow up, so NGOs handed out structured booklets to write down both important information (family relations, what does the family own?) and personal information/ letters to the child once the child is old enough to understand them.

      Too much personal history gets lost when a person dies, structured writing-down or interviewing can help make things clear.

  41. Be Kind to Yourself*

    For anyone interested in starting conversations with family about death, I highly recommend Caitlin Doughty aka AskAMortician. She has some great books and really interesting videos on YouTube. She gives practical information for those who need it and also covers topics for those more broadly interested in the history of death and the perception of it.

    1. Mornington Crescent*

      Yes! I came here to mention her too. Her videos are very insightful and interesting, and I really like how frankly she speaks about the whole business.

  42. Shutterdoula*

    I’ve been a birth doula for 20+ years, and when we had a family member go through the dying process, I was pleasantly surprised at how well my birth doula skills were helpful to their immediate family.
    A life transition is a life transition, and support is useful for both.

  43. properlike*

    Atul Gawande’s BEING MORTAL is a wonderful book about the American – and medical – approach to death, and his own struggles with encoutering it as his parents aged.

    1. Shan*

      I was just going to make a comment recommending this book! I read it right before my dad died last year, and I feel like it really helped me centre his needs over my own fears.

  44. Cat Lover*

    Before looking at her contact info, I wondered if she was in northern Va/ DMV, due to listing INOVA’s life with cancer. (INOVA is a large hospital system). She is! I’m a paramedic in the area and I think this would be super useful for some patients I see.

  45. Dandylions*

    The biggest disadvantage of Hospice is that you can’t be actively seeking treatment. There are many people who are dying in a year while seeking treatment because no treatment means at most a few weeks.

    I wish I had heard of a death doula for my MIL. Her primary caregiver especially needed the support in her last 6 months of life but she only quite treatments in her last 7 days of life.

    1. Aspiring Chicken Lady*

      I listened to an interview with a death doula who spoke of working with an individual for years. The individual had a significant health condition for which it made sense to have that length of lead time, and was able to have the appropriate support after diagnosis.

  46. BeeCee*

    Thank you for such a post on a job that is important but may not be in people’s radar. It is too easy to direct kids to get trainings or education for professions that many see regularly: an engineer, a doctor, a nurse, a lawyer, a teacher, an accountant, a chef, a social worker, a firefighter etc.

    In the future, please highlight more professions that many could overlook.

  47. Knittercubed*

    I belong to a pagan organization and they have death midwives to help the person transition in a culturally appropriate way.

  48. RetiredAcademicLibrarian*

    I once attended a weekend mindful meditation workshop where the workshop trainer was a former hospice chaplain. . She wrote a book about her experience as hospice chaplain that sounded a lot like what the death doula here described. She was a Buddhist who worked with people in hospice who were Christian, Atheist, Buddhist and other belief systems. I bought her book about her experiences after the workshop and found it very interesting – Dandelions Blooming in the Cracks of Sidewalks by Amita Lhamo.

  49. Festively Dressed Earl*

    Fascinating. To me, it sounds like you’re an end-of-life mediator between the client, their loved ones, and the other professional caregivers. Getting people to swallow the frog and just talk must take incredible skill.

  50. Quality Girl*

    I’d be remiss if I didn’t point out that people living with dementia (including Alzheimer’s Disease) qualify for longer-term hospice services in the US. I believe it’s up to two years, rather than six months, and it is (or should be) focused on increasing quality of life for this very difficult terminal illness.

  51. Sparrow*

    Thank you for this interview–the death doula profession is one that’s interested me for years, so this was a really fascinating interview to read.

    A follow-up question to Sharon, if you happen to see this: you mentioned at a few points in the posts that death doulas generally don’t provide spiritual guidance/counseling. Could a death doula who also has religious training provide spiritual guidance to their clients, or would that pose issues?

    Context for why I’m asking: I belong to a very small minority religion (small enough that I always have to check “other” on forms asking about my religion), and when I lost one of my parents a few years ago in a very sudden and traumatic way, one of the things I really struggled with was not having people I could lean on for religious support. After this experience, something I’ve been thinking about a lot is getting death doula training and also becoming an ordained member of my religion’s clergy in hopes of helping other members of my religion who are experiencing death, either their own or the death of a loved one.

    Having training for both seems very appealing to me, as members of my religion tend to have very specific wishes for their funerals/burials/legacy projects, and I think of lot of us would really appreciate being able to work with someone at the end of our lives who’s able to provide spiritual guidance as well as practical guidance that’s driven by a very deep understanding of why we want the things we want and how important they are to us. Do you think this could pose any issues, though?

  52. Maggie L.*

    I’ll join everyone else in sending you and your mom my best wishes, and I thank you for posting this interview. I also enjoyed the linked articles. Your mom is a wonderful person, and when I read how, after not dying “on schedule”, she figured maybe she should make a dental appointment after all, I realized she’s a laff riot, too! I hope you have lots more good time ahead together.

  53. Jiffy*

    So often in western medicine we see death as a failure to prolong life, rather than the inevitable conclusion to life that comes to us all at different times. Leaving this earth should be the second, but as noteworthy, act that followed the first: being born. If we’re lucky we go out on our own terms in an environment we are comfortable with.

    1. Angstrom*

      It’s not just luck. You can improve your chances of a comfortable death if you plan for it.

  54. Jellybeans*

    This is fascinating! I’m so interested in the death acceptance movement and death doulas, I have a friend who is training to become one now.

    I actually just read a wonderful book she sent me called “Happy Death Club” which I highly recommend! Caitlin Doughty’s books about death are great too.

  55. Resentful Oreos*

    I don’t have much to add except thank you for doing this interview, Alison and Sharon. This is such a fascinating topic. I loved reading about it.

  56. nnn*

    I’m interested, in general structural terms, in how death doulas are paid.

    Is it a flat fee? Are they paid an hourly rate? Are they paid per individual service provided (like how your dentist is paid a certain amount for cleaning your teeth, then another amount for doing the filling)? When you first sign up for the service, how predictable is the final bill?

    1. jiminy_cricket*

      The way our collective does it is with a negotiated sliding scale contract up front. Whether it is pro bono or hourly or a bulk fee for services is all decided through a consultation.

  57. HiddenC*

    One of my friends is a Death Doula and seems to really love it. She holds a monthly “Death Cafe” in her city where people can come and ask her questions about end of life stuff. She also posts discussion topics like “what do you want to be remembered for after you’re gone”.

    I’m lucky that my mom has always been very frank about death and it’s something I’ve thought about, it doesn’t scare me like it seems to scare a lot of people. I mostly just hope to leave a gathered family history for my nephews (like recorded conversations with my mom about her childhood and younger years, while she’s still hale and hearty) so they can feel connected to their past.

  59. Oui oui oui all the way home*

    I work with a college that provides death doula certification. Because some of the for-profit death doula training programs offered by individuals can be costly, I suggest looking for lower cost training by searching for ‘college death doula training’.

  61. Back to being Jackie*

    This was an excellent post, and I’m so appreciative that you put this information out there Alison. I have been following your posts about your mom.

    One of my favorite cousins, the one I beat out by one month the summer of 1961 to have the distinction of earning “oldest grandchild status” was the first robotic pancreatic tumor resection in Pittsburgh 15.5 years ago. He is still with us, doing OK, and I will have the fun of seeing him again later this month at a family birthday celebration. His initial symptom was episodes of intermittent back pain, which his NP used her intuition and had him get a CT scan. 25 years ago I was with him and his 4 siblings when we said goodbye to his mom, age 59, from a common bile duct tumor that was treated without success.

    I have been a nurse since 1984, the last 33 years of that as an anes. nurse. During the pandemic summer of 2020 I was with my father at home, alone, holding his hand as he passed away from colon cancer, while one of my siblings was in the garage smoking and drinking because she couldn’t “deal”. Two years later it was the same scenario with my mom from complications of aspiration pneumonia, me alone–in the hospital where I still work part time. I had the best care team under the circumstances, and I have to say I have never heard of a Death Doula before. I would have welcomed someone to provide the emotional support I (and my parents/family) most definitely needed–I was the medical expert, the caregiver, the power of attorney, the signer of medical forms, the “go to” person for EVERYTHING, while still working, and grieving, and the one thing that I didn’t see mentioned in your doula post was how they rise to that challenge of patient and family “craziness”- I was trying to navigate the toxic family members, old resentments, and the complete inability of us to have civil converstations regarding the plan of care for each parent. I think a death doula would have been invaluable to us in our dysfuctional situation–my parents were very affected by the discord that erupted and continued until their deaths 2 years apart. It contributed to much of their anguish facing their imminent passing. It seems it is usually one family member that creates the chaos.

    No remembrance services/funerals, no published death notices, and absolutely no temporary sibling reconciliations during this time for each parent. I scattered their ashes alone at their home. The fact that they did not have an abrupt passing meant there was time for each to say goodbye to friends and other family–it helped their loved ones have closure, but I have to say witnessing this over and over ( x 2) was truly the most heartbreaking of moments. Just when you think you can’t endure anymore, you dig deep in your soul and somehow continue on, for them.

    My heart is with you Alison, and your mom and family. I am so thankful that you have Sharon as your doula to help with all of this – it takes very special compassionate people in this role to bring relief, support, empathy, and hugs to the table.

  62. Lindsay*

    I somehow just stumbled upon your post about your mom’s illness. My mom was just diagnosed mid-April with a grim prognosis of 2 months with no treatment, 6-12 months with treatment. Thank you for sharing the resources, legislative action I can take in a state that isn’t even on the table currently, and interesting information on Death Doulas. I had never heard of this. Best of luck to your mom and rest of family.

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