What does an End-of-Life or Death Doula actually do—and what do they not do?
|
“A trained, non-medical professional who intentionally holds her clients and their loved ones with extraordinary compassion and kindness. She brings emotional, practical, and unbiased support and expertise for those nearing death. This caring professional is often called upon to provide comfort, calm, education, and resourcing for the dying person and their loved ones.”
The role of an End-of-Life or Death Doula varies from person to person, based on their skill sets and gifts. In my case, I serve clients by providing a calm inside a storm, where they can be more present, peaceful, and able to access their inner voice. This allows them to make decisions from a spacious clarity, rather than from fear, anxiety, or the desire to please others. As a death doula with a biology degree and a background in medical writing, I am also adept at working with people who have just received a diagnosis or who have been pursuing treatment but aren’t sure what to do anymore. I’m a bridge between the clinical world and their pesonal world - helping them to work through what’s happening emotionally, while also facilitating their decision-making processes as they determine what treatment(s) align closest with their values, goals, and their sense of a meaingful daily life OR whether it’s time to stop treatment to experience the most quality and meaning in the days they have left. |
My service offerings include, but are not limited to:
|
Myths about End of Life Planning
- I don’t have to think about this “yet” (it’s never too early to think about death and what kind of life we want to live because you are living until you are dying). Also, the reality is that I’ve seen very few people die exactly how they expected to…even in the “expected” situations - there can be unforeseen things that crop up (a fall, heart attack, etc.) that acutely change the trajectory for people. A plan, support team, doula, designated decision makers, etc. - make it all far less scary or stressful.
- People don’t die like they do in the movies (Barbara Karnes, R.N.). That quote is so true. Movies and TV have done a serious disservice in how they’ve portrayed CPR, end of life scenes, and death scenes. Most deaths (barring emergencies) are slow ones, and the body goes through many significant changes. Accurate education and expectations help loved ones and caregivers understand what’s normal and makes them more comfortable at the bedside. Most on-screen end-of-life/death scenes are as realistic as most birth/labor scenes. In other words, real life/death is NOT like that at all.
- Dying is painful. Dying isn’t painful. Disease symptoms can be, and that can be managed. Dying can cause a certain amount of agitation and discomfort (lying in bed for days/weeks/months requires informed comfort care), and that can be responsibly managed, too. But often, after the pain is gone, the painful things are the words unsaid, emotional issues unresolved, or fears of the unknown. Death doulas can help bring ease and calm around those and other issues - or help bring other community resources into the mix.
- Pain management means knocking me out. Not true at all. In fact, responsible comfort care and pain management involve many conversations about what each client wants in terms of mental clarity and lucidity vs. sedation. It’s a very personal choice. Pain management should ALWAYS be about service the client’s wishes and not used to make caregivers more comfortable with what’s happening.
Myths about Hospice
- Hospice means death. No. Hospice means access to a FREE (all paid for by medicare, available to all ages) incredible support team for the one who has the disease and their loved ones/caregivers. Hospice does mean you need to be okay with stopping curative treatments, though. If you’re not ready for that, but daily life is becoming challenging - or pain management is tricky - then your doula will recommend looking into palliative care for now.
- We can’t afford hospice care. Hospice is free for all, regardless of age/income or any other qualifiers other than you have to have an EOL diagnosis with a prognosis of roughly 6-months or less (but that can be extended/renewed if people live longer than that, depending on the circumstances).
- It’s too soon for hospice, I’m not dying yet. Hospice agencies should be interviewed soon after a terminal diagnosis, so you know who you want to hire if/when you need them. Once you’re no longer pursuing curative measures, hospice should be brought in right away because their full-spectrum care team makes things far more comfortable and is available 24/7 to answer questions and provide information.
- Hospice means access to full-time caregivers. Hospice means you’ll have access to regular home visits (if you want to be at home - hospital/facility visits otherwise) by nurses, aids, etc. These visits are scheduled according to need. In the beginning they may only be once or twice a week. In the final weeks, you may have a visit for a short time each day. However, they are not full-time care providers. If that’s needed, family, friend, or professional caregivers will need to be brought on board to help out.
When is the right time to bring an End-of-Life or Death Doula into the care journey?
The earlier the better. Hiring a death doula as part of proactive end-of-life planning (like estate planning) is the best way to do things because those plans can be implemented in an emergency or unanticipated scenario (like a fatal car accident, heart attack, stroke, etc.).
In my experience, people don’t die as they planned to and dying may not be how they (or family caregivers) expected it to be. Most people, even if they accept they’re dying, can wind up in a panic when an unexpected event (a fall, medical emergency, accident, etc.) makes death imminent. With a doula on board, or with clear, printed, end-of-life care plans that your loved ones can access, the panic/fear diminishes and decisions can be made with informed, grounded clarity.
The next best time to bring a death doula into the picture is in the early stage of a terminal disease - even if you’re planning to cure it or treat it for an extended period of time. EOL plans bring exponential peace of mind and can also be a big part of helping people make treatment/stop treatment choices as they think about physical, emotional, spiritual comfort and quality of life.
Otherwise, we are often hired when an emergent system throws an individual and their loved ones into a shock and fear mode - and they need calm, anchored support to make informed decisions for the best quality of life and care for the time remaining.
In my experience, people don’t die as they planned to and dying may not be how they (or family caregivers) expected it to be. Most people, even if they accept they’re dying, can wind up in a panic when an unexpected event (a fall, medical emergency, accident, etc.) makes death imminent. With a doula on board, or with clear, printed, end-of-life care plans that your loved ones can access, the panic/fear diminishes and decisions can be made with informed, grounded clarity.
The next best time to bring a death doula into the picture is in the early stage of a terminal disease - even if you’re planning to cure it or treat it for an extended period of time. EOL plans bring exponential peace of mind and can also be a big part of helping people make treatment/stop treatment choices as they think about physical, emotional, spiritual comfort and quality of life.
Otherwise, we are often hired when an emergent system throws an individual and their loved ones into a shock and fear mode - and they need calm, anchored support to make informed decisions for the best quality of life and care for the time remaining.
How does end-of-life planning can bring peace before a crisis?
Unequivocally, clients who hire me to help them create comprehensive (heart and soul-centered) end of life plans that provide clear instructions for physical, emotional, and spiritual comfort and calm. By having a clear plan and instructions for what you want (and don’t want) if you’re dying or unable to make decisions on your own is a tremendous resource for your loved ones.
End of Life plans (and/or support from a Death Doula) alleviates so much stress/angst from loved ones because in addition to knowing what you want - and being able to honor your wishes - they also get to just “be present” with you rather than having to scramble around trying to figure things out, feeling stressed/anxious or (in worst case scenarios) getting into tense or even dysfunctional family dynamics at the bedside.
End of Life plans (and/or support from a Death Doula) alleviates so much stress/angst from loved ones because in addition to knowing what you want - and being able to honor your wishes - they also get to just “be present” with you rather than having to scramble around trying to figure things out, feeling stressed/anxious or (in worst case scenarios) getting into tense or even dysfunctional family dynamics at the bedside.
What does a “good death” mean? Why does it look different for everyone?
A good death is one where, despite all of the shadow feelings that might emerge (sadness, anger, regret, fear, etc.), a person will ultimately have the feeling that, even if they don’t feel completely ready”, they can be at peace knowing they’re dying with minimal regrets.
This is why early EOL planning is so helpful. When we face our death in a conscious way, it almost becomes like a reverse-engineered life coaching experience. You become really clear on what’s meaningful to you and what’s not, and you start to make daily decisions accordingly so that each day reflects what a meaningful day feels like for you to the best of your ability.
Logistically speaking, a good death means you have chosen a capable care team, have communicated your comfort wishes, and have been as informed as possible so that you have a way to be present with whatever unfolds - both good and bad.
This is why early EOL planning is so helpful. When we face our death in a conscious way, it almost becomes like a reverse-engineered life coaching experience. You become really clear on what’s meaningful to you and what’s not, and you start to make daily decisions accordingly so that each day reflects what a meaningful day feels like for you to the best of your ability.
Logistically speaking, a good death means you have chosen a capable care team, have communicated your comfort wishes, and have been as informed as possible so that you have a way to be present with whatever unfolds - both good and bad.
How can presence be more powerful than fixing?
There is not much anyone can do to “fix” anything someone else is experiencing - outside of the practical realm (water for thirst, adjusting pillows if asked, position changed, hygiene, etc.). Emotional “Fixing” is far more about what we need to feel better/more comfortable than it is about the other person.
When you give someone the precious gift of your presence, you give them the rare and sacred experience of getting to be 100% themselves without judgment. It allows them the space to get to know themselves and have agency in their own learning, unfolding, growing, changing, and self-discovery. Presence is an ultimate experience of Love in its healthiest form.
When you give someone the precious gift of your presence, you give them the rare and sacred experience of getting to be 100% themselves without judgment. It allows them the space to get to know themselves and have agency in their own learning, unfolding, growing, changing, and self-discovery. Presence is an ultimate experience of Love in its healthiest form.
What do past clients wish they had known earlier about end-of-life care?
Most people don’t realize how important it is to think about what you want for end-of-life-care before a crisis happens. At that point, it’s a fraught and stressful scramble; so many meaningful things get left out of the picture in lieu of lots of unnecessary busy-ness, stress, and “doing.” People also don’t realize what tremendous peace of mind it brings to have a plan, and to share that plan with others. Your thoughtful, detailed, end of life plan relieves a tremendous burden from your loved ones during and after your death.
How can I support caregivers without burning out?
Caregiver burnout is a significant issue in our country because we don’t have affordable, high-quality care for those who need it. As a result, spouse/family caregivers suffer greatly and they are often survived by the ones they’re caring for!! OR, even if not, their physical and emotional health takes a toll that they never fully recover from. End of Life plans diminish caregiver burnout because they integrate plans for a collaborative care plan. Caregivers need:
- Weekly (daily would be better!) breaks and time for themselves.
- To be able to prioritize their own medical/dental/etc. appointments.
- Time for weekly self-care appointments.
- Time for a healthy social life.
- Help with meal planning, house chores, errand running, etc.
- Grief support and/or caregiver support group so they don’t feel so alone.
- Time in nature or in quiet settings to help their mind settle.
- Lots of opportunities to smile, laugh, and feel like they’re still a part of Life.
- All of that can be built into a care plan AND after taking one of my End of Life courses, you will be better versed at how to support those you know you are caregivers for others.
What is your Death Doula perspective on the role of ritual, memory, and legacy at end of life?
Rituals are a way to honor what is meaningful, and they are also a way to engage the body/mind/spirit in a unified way through embodied experiences. Some rituals are ancient and passed through specific traditions/lineages, while others are as simple as watching the sunset every evening while sipping a cup of tea. They can be very personal or communal.
As a death doula, I work with clients to establish what rituals or practices are important to them now, and how those can be adapted if they can’t physically engage the same way down the road. We also look to see if there are new rituals they’d like to bring into their life or that would help them with releasing, forgiveness, creating, etc., as they come to the end of their life.
Doing legacy work (establishing what’s meaningful to you, about you, and what you would like to pass on) is sort an embodied and creative way to leave a physical (or emotional) resonance of what your life stood for. Our culture tends to think of it as monetary/material legacy, and that is one way to do it. It can also be something as simple as giving your top secret Chocolate Chip cookie recipe and the ingredients to anyone you wan’t to share it with after you die, or having a native tree planted in all of your favorite local haunts, or whatever.
As a death doula, I work with clients to establish what rituals or practices are important to them now, and how those can be adapted if they can’t physically engage the same way down the road. We also look to see if there are new rituals they’d like to bring into their life or that would help them with releasing, forgiveness, creating, etc., as they come to the end of their life.
Doing legacy work (establishing what’s meaningful to you, about you, and what you would like to pass on) is sort an embodied and creative way to leave a physical (or emotional) resonance of what your life stood for. Our culture tends to think of it as monetary/material legacy, and that is one way to do it. It can also be something as simple as giving your top secret Chocolate Chip cookie recipe and the ingredients to anyone you wan’t to share it with after you die, or having a native tree planted in all of your favorite local haunts, or whatever.
What happens in an initial End-of-Life Doula session?
The first session is mostly dedicated to becoming more familiar with one another. I listen very deeply to what brought you to my office (or to my Live Like You’re Dying course) and what the ultimate goal is. From there, we start to create very personalized plans that honor who you are and what’s most important to you.
How do doulas support work alongside hospice and medical teams?
The doula is there to honor their client’s emotional well-being and to serve as an advocate whenever necessary. They don’t make medical decisions, but they can certainly remind the hospice or medical team of the client’s wishes as the EOL journey unfolds (and have a written/signed plan at hand to support that). Doula’s also provide a calm, peaceful, grounded presence that can support the hospice and medical teams to be calmer and more peaceful themselves.
What are some ways I can prepare for end-of-life conversations with loved ones?
I love nothing more than to meet with my client and their families to facilitate the conversations when the client’s end-of-life plan is shared. This can really help to keep things more centered and I can help redirect the conversation when emotions are high. Also, in most cases, EOL conversations should be held more than once, and in various phases, because there is a lot to unpack/process when you first read or review a loved one’s plans.
Preparation is key. The first step is just letting your loved ones know you are creating (or just completed) an end-of-life plan and that you want to share it with them. This often sparks responses like “I just can’t talk about that or I don’t want to hear it,” or even “You can’t die, I won’t let you.” There needs to be a short time to let things settle in, and then a date (in a reasonable time frame) should be set.
Preparation is key. The first step is just letting your loved ones know you are creating (or just completed) an end-of-life plan and that you want to share it with them. This often sparks responses like “I just can’t talk about that or I don’t want to hear it,” or even “You can’t die, I won’t let you.” There needs to be a short time to let things settle in, and then a date (in a reasonable time frame) should be set.
How does advance care planning support both myself individually and my family?
Any group I speak to, or class I lead, has attendees with horror stories about the hell that unfolded when a loved one was dying or died with no plans in place. It puts the people you love in an absolutely horrible position to make decisions and execute them, without knowing what you want. In worse case scenarios, huge family rifts occur as people fight about what should be done. And, if the person who is dying never wanted extreme measures taken to save their life, and loved ones don’t know that, the dying person can experience a tremendous amount of pain and suffering as a result of that.
Thoughtful Advance Care planning that goes beyond basic medical directives or estate plans gives loved ones and medical providers the information they need to honor your wishes, while ensuring you’re as comfortable and peaceful as possible. It also allows your family to be present at your death, and to feel less afraid, and that can yield incredibly special, meaningful, inspiring, and even life-changing experiences for them.
Thoughtful Advance Care planning that goes beyond basic medical directives or estate plans gives loved ones and medical providers the information they need to honor your wishes, while ensuring you’re as comfortable and peaceful as possible. It also allows your family to be present at your death, and to feel less afraid, and that can yield incredibly special, meaningful, inspiring, and even life-changing experiences for them.
End of Life & Death Doula Services, Treatments & Plans
If you are proactive about meeting with a doula and creating end-of-life plans, it will change the way you live - and can possibly shift your entire family culture because death and conversations about it become more about “meaningful, inevitable, reality” than about “scary future mystery”.
End of Life Plans become living documents that evolve and change the longer you live. The things you want when you are younger, or have young children in the home, may be very different when you’re 80+. Similarly, the people who would comprise your care team and the types of things that bring you comfort may also be very different.
End of Life Plans become living documents that evolve and change the longer you live. The things you want when you are younger, or have young children in the home, may be very different when you’re 80+. Similarly, the people who would comprise your care team and the types of things that bring you comfort may also be very different.
- Classes/Courses: These courses work at all seasons of life. The various courses and classes I offer cover a myriad of topics from the basics of what death is at the physiologic level, as well as what tends to happen to individuals emotionally/spiritually in the last months/weeks/days of their lives. Then there are classes that guide heart- soul-centered EOL planning which involved deep personal inquiries that help identify core values and illuminate how participants may not be aligning their daily lifestyles/choices around what’s most valuable to them.
- Other offerings cover things like living with dementia or terminal illnesses, or what it means to live a soulful life. So these offerings benefit adults throughout any chapter of their life, giving them a chance to learn more about these subjects in a non-pathologized or clinical way - and in a safe environment that fosters deep, connected community conversations on the topics. Everything I offer at Wishing Well continues to provide ongoing education, resource, and FAQ opportunities to learn more and more about all that’s available to - and to feel into what you want. It’s like anything else in life, the more you expose yourself to un uncomfortable topic, the more comfortable you become exploring it, the richer the experience is, and the more personal insight you can have.
- Grief Sessions, Groups & Retreats. People experiencing grief do not fare well when it’s treated by their therapists, physicians, or personal networks as something that can be pathologized, fixed, or healed. Grief is part of the human experience and it needs room, space, community, and processes in order to be digested, metabolized, and normalized. One-on-one sessions are a very personalized experience that are 100% dedicated to honoring the individual’s story and experience, listening, reflection, and then personalized processes, experiences, or practices that can help them move with what is happening to them - preventing toxic stagnation or a narrative/routine that keeps them stuck.
- Grief groups are even more potent because there is something so special, tender, and nourishing to sit with your grief in a community of people who remind you, “You are not alone, and we are right here with you.” My grief groups are not organized around a “curriculum.” While I draw from a wealth of resources and tools, they are all living, breathing spaces where what unfolds is entirely dependent on who shows up - and what surfaces - during our time together. This organic arising means I can offer a “no pressure,” completely safe environment for people to feel, share, explore, nourish themselves and one another, and “just be.”
- Grief Retreats are a much deeper, richer, and more concentrated version of a grief group experience. I facilitated them with other trusted, soul-healing colleagues. We call them “Spontaneous Villages” because they are formed on evening one, weave tightly together over the course of our time together, and that collaborative participant weaving allows us to dive deeper into the processes we create together. They are incredibly cathartic for those who attend.
Why are education, preparation, and presence deeply connected?
I believe that if you are called or drawn to any of these offerings, there is a need. That is the “inner-voice” nudging you toward something you need or are ready for. Because I don’t work from a set script, curriculum, or strategy, I’m always listening to where the client is, and then framing the work we do together around that.
Information and education strip away that dark, scary, anxiety-making mystery space that so often shrouds a person’s idea of dying, death, or the overwhelming experience of grief. By being willing to step into companionship with another and explore these tender topics, learn more, and begin preparing for them - anxiety is immediately relieved. Normalization means you’re not alone, and when you’re not alone, you’re not as scared. Now, you have companions to lean on, share with, and open up to as your complete self.
It’s all interwoven in the work and the experience of personal unfolding and community connectedness.
Information and education strip away that dark, scary, anxiety-making mystery space that so often shrouds a person’s idea of dying, death, or the overwhelming experience of grief. By being willing to step into companionship with another and explore these tender topics, learn more, and begin preparing for them - anxiety is immediately relieved. Normalization means you’re not alone, and when you’re not alone, you’re not as scared. Now, you have companions to lean on, share with, and open up to as your complete self.
It’s all interwoven in the work and the experience of personal unfolding and community connectedness.
How does this work support individuals, families & communities?
When someone you love is dying, or is grieving, you want to honor and support them the best you can. In the case of someone dying, that involves an incredible amount of decision-making that is crippling if you’ve never talked to them about it before or they’ve never told you what they wanted/needed. So at the inner-most realm (your relational center) this work supports you and your family.
However, the more people who experience how transformational a death can be (not beautiful or amazing - which can happen - but there’s also unpretty, icky, and triggering things that happen), the more they can support their extended family, friends, neighbors, etc., in being more comfortable talking about, learning about, and planning better for death. One by one by one, we can forge much stronger death-aware communities, and this shifts the landscape of what’s possible for living more meaningful lives, improving our local healthcare systems, bringing better support opportunities for caregivers, and son on.
However, the more people who experience how transformational a death can be (not beautiful or amazing - which can happen - but there’s also unpretty, icky, and triggering things that happen), the more they can support their extended family, friends, neighbors, etc., in being more comfortable talking about, learning about, and planning better for death. One by one by one, we can forge much stronger death-aware communities, and this shifts the landscape of what’s possible for living more meaningful lives, improving our local healthcare systems, bringing better support opportunities for caregivers, and son on.
What does it means to approach death with intention, compassion, and care?
- Intention: Be willing to acknowledge you will die, and begin thinking about what you’d want when that time comes (mostly out of your control). Begin thinking about what makes you physically, emotionally, and spiritually comfortable. Imagine what you’re family will have to navigate logistically during and after your death and begin getting things in order to ease their way. Be willing to honor others who are terminally ill or facing death and be a person they can talk to about it openly. Those are the beginning steps of living and dying more intentionally.
- Compassion: This begins with self-compassion. Be gentle with yourself and honor your tender places. When you are compassionate with yourself, you become a more inviting and welcoming person to others without doing anything else. Then, as you move about the world, and as you learn more about others’ stories, practice compassion with them. If you know someone who’s dying or who loves someone who is dying, the most simple offering can be an invaluable gift: “I can imagine what you’re experiencing is so hard. I am always willing to listen or be a sounding board if you need to talk about things.”
- Care: If you can do anything at all to support someone/their family/caregivers who are in that excruciating, all encompassing caregiving space, do it. Be specific. Most people won’t tell you what they need. They’ll say “I’m fine.” or “we’re okay.” Instead, put together a meal training, ask if they’d rather you do some house keeping jobs or do a grocery run. Offer to walk the dog. Ask if they’d like someone to sit with their person for a few hours ever week (respite care) and then set up a list of friends who can do shifts. And of course, refer them to a death doula so they can have compassionate, non-judgemental, informed resourcing and guidance that is wholly dedicated to their needs/values/preferences.
How can families support a loved one without knowing “the right words"?
- Let your loved one talk about dying/death. So often, families/loved ones say things like, “We don’t need to talk about that yet...” or “You’re going to be fine, don’t think like that…” or some other version of those. The problem is, it leaves the person who wants to talk about it very isolated, lonely, and unsupported. If you aren’t comfortable talking about death (and it’s not easy when you can’t imagine life without that person), do your best to listen, be curious, and honor any requests they have. If that’s too hard, contact a Death Doula or someone else who is able to sit with them and listen to their thoughts, fears, concerns, wishes, etc. Ideally, that doula or spiritual dirctor, or social worker/therapist will also be able to integrate you (or others who have a hard time talking about it) back into the conversation. In almost ALL cases, I’ve found that once people get over the initial “resistance hurdle” the conversation overflows will all the things they’ve actually wanted to say/ask/know that they were bottling up in a shroud of fear.
- No words are often the best words. Most of the time (towards the very end), there aren’t many words required. Deep listening means not putting your two cents in. It means listening to a person with your eyes, ears, and heart and then reflecting back what you’re hearing. It can mean sitting in silence and not saying anything unless you're asked for an opinion or for feedback.
- Talk about feelings rather than thoughts. If you don’t know what to say, be honest about feelings. If emotional language is difficult, a death doula can help you sort through that. But even without a doula, just keep it simple, “I’m mad/sad/glad/afraid...” And then see where those sentences lead.
- Take walks down memory lane. If you can’t access “feeling talk” and you’re just plain uncomfortable, you can take a walk down memory lane. Most people who are dying are already doing some type of “life review” in their inner landscape (even if they aren’t sharing it verbally). You can help that by looking at old photos with them, sharing favorite (and not so favorite) memories together, watching favorite movies or shows together, playing favorite music/songs and just listening (or singing, or dancing) together.
- Asking if there’s anything they’d like to do/hear/read/etc. Depending on their level of mobility or interests, actions may speak more meaningfully than words. Would they like to hear something read to them? Would they like to be wheeled out to the porch and watch birds at the bird feeder? Would they enjoy being by a window and watching you play fetch with their dog? Is there a song they’d like to listen to or a photo album they can’t reach that they’d like to look at?
- Put albums together. Just like people put off planning for death or creating detailed end-of-life plans, they often put off getting old photos together or writing down the names/dates on the back of existing photos. Sitting with them to do these things together is not only invaluable for them, you, and other loved ones - it is bound to start conversations or spark memories that wouldn’t have come up otherwise.