End-of-Life Doula Support
A doula (pronounced DOO-luh) is Greek for "a woman who serves" and is now used to describe a person of any gender who provides non-medical support and guidance, usually in times of transition, like birth or death. End-of-life (EOL) doulas provide practical, emotional, and spiritual support to the dying and their family or care circle.
Aijung Kim — I Went Hunting Linocut
As an EOL doula, I provide companionship, education, practical assistance, advocacy, and planning. My flexible approach is guided by a holistic framework that recognizes the physical, emotional, and spiritual needs of the dying person as well as their care circle. I learn what's most important for the big picture and in the current moment (through the assistance of family/caregivers, if the person is no longer capable of verbal communication) for there to be a sense of comfort and peace as things progress toward the end. Values and needs are identified and become the basis for a plan for the most peaceful, supportive, calm, and meaningful transition possible.
Throughout the time with the person and family, I can be a non-judgmental sounding board, a facilitator of hard conversations, a liaison and advocate interfacing with hospice and palliative care, respite for carers, and available for an almost limitless range of practical tasks that make life easier at a difficult time: from light housework, errands, decluttering, and making a "sick space" more comfortable and comforting to creative legacy projects and creative, meaningful end-of-life rituals and ceremonies.
Although death is a door traversed alone, many hands can hold us as we approach and prepare for the passage, for ourselves or for a loved one. With creativity and flexibility, I will assist you and your family with any of the following and more.
END-OF-LIFE DOULA
SUPPORT MAY INCLUDE:
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advance care planning
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education about the dying process
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suggestions for comfort measures
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advocacy for the best care possible
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environmentally friendly, cost-conscious final disposition options
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vigil sitting in the final days
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emotional support
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legacy/memorial projects
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setting up home space for care
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household tasks
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errands
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respite
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organizing and decluttering
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resources
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referrals
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meaningful rituals for dying and after death
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What is an EOL doula?Doula is an ancient Greek word meaning “woman who serves.” Today, a doula (of any gender) brings their caring presence, comfort, and experience to the threshold times of life that they serve – birth, death, and other major transitions. An EOL doula is a supporter who provides warm, professional care that suits your needs – practical, emotional, and spiritual. The end-of-life doula care I provide can include planning in alignment with medical care plans, advocacy and gathering resources, preparing people and spaces for end-of-life care, keeping company and vigil, conversations large and small, in-person visits and phone consults – so much is possible.
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What practical concerns can an EOL doula help navigate?EOL doulas can help you understand your options and complete documents including Advance Care Directives and Health Care Proxy forms. They can be an objective guide through burial or cremation planning and cost considerations. A doula can serve as a liaison and advocate interfacing with hospice and palliative care. EOL doulas offer support to the dying individual and their family or caregivers. I have provided these services as well as giving my clients a reprieve from the overwhelming and exhausting tasks of caregiving and practical assistance such as light housework, running errands, decluttering, and making a “sick space” feel more homey. I can also help after death occurs, guiding survivors through tying up loose ends, dealing with belongings, and being a caring presence during the adjustment period after.
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What emotional concerns can an EOL doula help navigate?Family dynamics vary, and navigating the emotional challenges of relationships can get even more complicated during times of stress and crisis. An EOL doula can be a supportive presence during difficult family conversations, offering non-judgmental support through meaningful conversations and decision-making. This can be particularly helpful when family members disagree with the dying person or each other about wishes for care, stopping treatment, and funeral plans. I can sit vigil with family who may be uncomfortable doing so alone or take a turn at the bedside when caregivers need a break. I can tend to practical needs (pet care, running errands, etc.) outside of the dying space to make it possible for others to be there. As death nears, I provide reassurance and education about the dying process, suggest comfort measures, and offer suggestions for what to do in the immediate time after dying occurs, to soften the transition as much as possible for the bereaved.
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What spiritual concerns can an EOL doula help navigate?As humans, it’s almost universal for us to feel that this life we’ve been living has served some purpose. My emphasis is on respecting the beliefs of all and finding creative ways to meet different needs within the framework of an individual’s existing belief system. As we contemplate the end of life, it is common to spend time thinking about what it has meant to be alive, how we feel about dying, what happens after we die, and especially, what feels incomplete or is bringing up worries and fears. What’s not as common is talking about these things, so it’s difficult to bring up even if we want to talk about them, yet keeping the thoughts inside can create undue burden and stress. I follow clients' lead on how much "death talk" they desire. This can be especially helpful if there is something weighing on them or something that feels incomplete that I can help them to accomplish. This could be anything from listening to past hurts to rehoming a beloved pet or sorting through belongings. I listen to the values of the client and help them access that meaning and find comfort. This may include making connections with the dying person’s faith community to provide spiritual support. One particularly meaningful thing clients have enjoyed is having creative, personalized end-of-life rituals and ceremonies before death, or as part of immediate after-death body care, in alignment with your values.
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Where do you provide EOL doula services?I meet wherever I’m needed or wherever feels comfortable to the person who needs me. I can go to the hospital, hospice home, skilled nursing facility, or home to meet with the dying person. Caregivers or other family members sometimes like to meet separately, and we can do Zoom, phone, or in-person someplace private. I’ve met family members at work, over walks in the park, over lunch or tea, really anywhere!
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What is a legacy or memorial project?Many people feel a call to establish a legacy that shows who they have been in the world as a way of having their life remembered. It could be a tangible memorial project (such as a video or book “life review,” collection of family recipes, quilt, meditation garden…the possibilities are endless!). I encourage families to think about what they might like to do based on interests, values, skills, finances, etc. and help make it possible. For families that don’t feel comfortable talking so directly, having someone outside the circle can actually make it easy to get those remembrances happening in a way that feels comfortable.
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What is life review?We all have a need for meaning, purpose, and to be remembered. For clients who are able, I ask them about themselves and their lives. Having someone new to talk about the life that’s been lived can be a comfort, even if it’s to express regrets and sadnesses. Reflecting on past events and seeing how the world is different and better in some ways for having been here can help people have a concrete sense of the meaning their life has held. Some clients choose to record or write down their life review, while others may just want to talk.
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There can be conflict in our family. How can you help?Where there is conflict, hurt, or a lack of closeness, family members might want to talk out some of the feelings they’re having to someone neutral, and I can be a buffer when boundaries are necessary. I can also help navigate even apparently conflicting needs within the family by listening to the concerns of all involved and helping to find a path forward that works for the dying person and those around them.
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I already have family support. Do I still need a doula?For the greater part of the several decades, Americans have typically died in the hospital, unless the death was unexpected. That’s left us without a good cultural understanding of what is normal as the body begins to go through the dying process, what comfort measures are helpful (and what things are not helpful) near the end of life. Also, many people aren’t comfortable talking about death, or more commonly, they wish they could talk about what’s happening, but no one knows how to start the conversations. Or there might be challenging family dynamics at play. Even in the best of circumstances, it’s a great help to have one person who isn’t grieving the impending loss who can carry some of the burden and be a listening ear and a shoulder for all those involved. Understanding what’s happening can mean the difference between a traumatic memory of the experience and a meaningful one for the bereaved. And even with the most support, people get burned out or may feel frustrated or guilty and have feelings they may not want to talk about within the family.
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What if I don’t have a lot of family and friends who can help me?Sometimes people don’t show up to help because they don’t know what’s needed or don’t want to intrude, and it can leave us feeling isolated and alone. I can help you identify a care circle to draw on as needs change and the situation evolves, or if there isn’t anyone, there are resources in the community who could fill in gaps, and I can make myself more available if needed.
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How far in advance should I hire an EOL doula?It’s never too early. Doula support can be helpful at many stages, whether you need hands-on death doula care this week for a person in their last days or want to consciously traverse a life-changing illness in supportive, knowledgeable company. It can begin when your elderly family members are ailing and ready to mindfully down-size or when you know that you are nearing your last days and want to ensure that the funeral plans you choose are followed.
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What is the difference between EOL doula care, hospice care, and palliative care?Doulas are not medical providers, but they can fill in gaps not addressed by medical care. Both hospice and palliative care are medical treatment paths carried out by a team that includes medical professionals and may also include social workers and chaplains for psychosocial and spiritual support. Both strategies include pain management and quality of life as a key goal. However, hospice care is exclusively for terminal patients who are no longer undergoing curative treatments and whose prognosis is less than six months of life if the disease process continues in the expected way. The term “hospice” may also be used to mean hospice centers, which are 24-hour care facilities, but hospice care can actually be provided in hospitals, in the home, or in nursing homes. Palliative care is pain control and symptom relief for anyone with a serious medical ailment, even if the diagnosis is not terminal and the patient is undergoing treatment intended to cure them. As an EOL doula, one way that I can help you is by helping you understand and consider all your options, including entering hospice care. I can also help you adjust to the new routines and changing needs that you will experience during this time. I can supplement the services and work alongside hospice being a liaison with hospice and palliative care providers, whether the setting is at home or in a care facility. I’m skilled at navigating relationships and conversations, and creating a more peaceful and comfortable setting wherever care is taking place.
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Can I get support through medical aid in dying (MAID) or voluntary stopping eating and drinking (VSED)?Medical aid in dying (MAID), the act of ending one’s own life by taking a lethal dose of medication prescribed by a physician, is not legal in New York State at this time. Voluntary stopping of eating and drinking (VSED) is a legal option, one which is best carried out under physician care for the greatest degree of comfort throughout the process. I don’t plan to offer MAID support should it become legal, but in some circumstances would feel comfortable supporting someone who is hospice-eligible (anticipated to die within six months) through medically supervised VSED. I am always happy to help families find resources and support to deal with the natural changes that can take place with aging and disease progression.
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Are home funerals legal?Yes, home funerals are legal in all states. The regulations differ by state, and New York State has more restrictions than others, specifically, the use of a funeral director to facilitate transportation, file paperwork, and supervise final disposition. This does not hinder the ability of the family to have a home funeral. NOTE: Since home funerals are uncommon, some care providers (such as hospice workers) may not know you have the legal right to keep your loved one at home after death. Planning ahead avoids any complications that could arise from someone challenging your rights.
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Are home funerals safe?Yes. Bodies don’t typically pose any additional health risk in the days after death, and you can continue to be near, touch, and care for your loved one while they are at home. With proper hygiene and cooling, the person can be kept safely laid out for multiple days if desired.
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Why choose a home funeral?A home funeral gives families and loved ones many moments to show love in the ways they wish to, to continue loving someone in the first hours and days after their death. It can be heart-wrenching and jarring to have the person suddenly gone, and unsettling or even deeply distressing to have them in a strange place, being handled by strangers who don’t know or love them. This rite of passage recognizes death as part of the life spectrum and after-death care as a natural and intimate extension of the care given during life. Inherent in the home funeral is a deep respect for the physical body of the person who has died and a sequence of events that is slower paced than with conventional death care. A home funeral gives the gift of time…time to let the experience unfold, time to grieve, to adjust, to connect, and to comfort one another. A funeral held in a familiar and comfortable setting is more open to meaningful contact between attendees. There need not be any receiving lines with hurried, repetitive expressions of condolence. The hushed tone that often occurs in the room where the body is at rest can coexist with spirited story-sharing in another room or children playing in the yard. Mourning can take different tones in different spaces throughout the home.
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Does a home funeral have to take place at the home of the deceased?No. If a different setting is preferred, a body can be transported elsewhere for a home funeral. For instance, a person in assisted living could be brought back to their adult child’s home, or I could guide the family through meaningful after-death care and a simple ritual at the facility, allowing other residents to visit.
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If my loved one dies elsewhere, can we still have a home funeral?Yes, they can be brought home after death for a home funeral. The simplest home funeral is one where it’s an expected death with a planned home funeral, and the person dies at home, or perhaps in the hospital, and is transported home. When this is not the case, and the death is unexpected, an autopsy is required, there has been organ donations, etc., specific arrangements would depend on the circumstances. I can liaise with others to see that your wishes for a home funeral are realized as closely as possible.
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How long does a home funeral last?Most often, the body will be laid out at home for two to four days until the time of burial or cremation, and this may include some time for friends and family to come and visit. But because a “home funeral” is any family-centered death care, it could also simply take the form of bathing, dressing, and laying out the person or waiting several hours or overnight before calling a funeral home where the person would stay until burial or cremation.
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Is it possible to have a home funeral if an autopsy is necessary or organs are being donated?In most cases, yes. I can liaise with the medical providers involved to help you navigate these possibilities.
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Is it too late to plan a home funeral when my loved one is actively dying or has just died?For many reasons it is ideal to plan ahead, but it is still possible to have a home funeral if you haven’t. Please reach out right away.
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It sounds overwhelming. I don’t know how to prepare a body, arrange for transportation, organize a ritual… How can I do it all?Families can conduct a home funeral on their own, but for those who would feel comfortable with guidance, I can provide education ahead of time on after-death body care, in-person guidance for those preparing the body after death has occurred, and resources for supplies. An initial complimentary phone conversation can help you decide how to proceed.
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Is embalming required?No. A commercial funeral home has the right to refuse a public viewing time if the body is not embalmed, but there’s not a requirement for it except in some cases where the body is being transported via air carrier. The process of embalming is invasive, not gentle, and often results in toxic chemicals and body fluids being released into our water systems. It can be disorienting to some (especially children) to see someone who is made up to look alive but isn’t. Many home funeral families report that seeing their loved one in the natural state after death, rather than looking artificially “alive,” helped them to accept the reality of what has transpired. Proper care and grooming or makeup (if desired) can be sufficient for home viewing, and you’ll know that the deceased person was handled with love and the utmost care and respect.
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What about body changes over time?There are some changes that take place but slowly and subtly, and with proper cooling and simple body care, it’s not anything concerning; it’s just what bodies do. It doesn’t have to feel any more frightening or distressing than a funeral home viewing might be; I can help you understand what to expect. Families have home funerals because they’re comforted by the idea of a slower goodbye, and once they’re involved, don’t find the changes upsetting. In some cases a family might choose to shroud their person, or have them in a closed casket, throughout the time at home. There’s no one right way to do it.
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Are home funerals expensive?The mortuary industry involves selling of products and services, and of course if you’re tending to your own, there’s no cost for body care, dressing, etc. Due to New York regulations, a funeral director is still required for specific tasks (filing paperwork, transportation arrangements, and overseeing burial or cremation). The cost can vary by thousands of dollars depending on the funeral home, and not all funeral homes are willing to work with families planning a home funeral, but I’m happy to share the names of those who have been, and go over any proposed plans to be sure you’re only paying for the services required under the law. You will also need to consider costs of interment or cremation as well as a container. Many home funeral families value the simplicity of an inexpensive plain wooden box or cardboard cremation container, and have found creative ways to personalize and decorate them. There are also wicker baskets, shrouds, or conventional caskets if desired. I can help you explore options that are meaningful, environmentally friendly, and within your budget.
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Do we need to hire a guide?While I’m happy to be your guide, the beauty of the home funeral is that you and your circle of support really can plan it all on your own. So far, each family has chosen to have my guidance for their first family-directed funeral, but it’s my hope that with each family I help, they feel empowered to teach others. There is often a strong sense of community and connection at a home funeral, and many people come away changed and feeling a desire to learn more about the possibilities for themselves. I dream of a future where home funerals are common, and experienced families share their reclaimed wisdom and knowledge of how to tend to our own.
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Do we need to hire a guide?While I’m happy to be your guide, the beauty of the home funeral is that you and your circle of support really can plan it all on your own. So far, each family has chosen to have my guidance for their first family-directed funeral, but it’s my hope that with each family I help, they feel empowered to teach others. There is often a strong sense of community and connection at a home funeral, and many people come away changed and feeling a desire to learn more about the possibilities for themselves. I dream of a future where home funerals are common, and experienced families share their reclaimed wisdom and knowledge of how to tend to our own.
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Where can I learn more?The National Home Funeral Alliance is a valuable resource for anyone considering or planning a home funeral. I recommend checking it out whether you’re hiring me or not. I’m committed to empowering families to conduct home funerals on their own and understand that, even though this practice is as old as humanity, most people will be unfamiliar with home funeral care and will be more comfortable with some guidance.
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What is a home funeral like?The family-led experience you have will be uniquely your own. It can be as long or short as you need. The deceased can be laid out wherever it’s convenient or meaningful. You can have visitors or not. You can choose a conventional container or something more unique. Children can be as involved or uninvolved as they desire, on their own terms and their own timeline. Almost universally, holding a home funeral can start out feeling like wading into uncharted territory, and wind up feeling incredibly comforting and empowering. The National Home Funeral Alliance has created A Path Home, a wonderful, heartfelt podcast of real families sharing their own home funeral stories. Some had planned home funerals, some were unexpected deaths, some had initially-reluctant family members. https://www.buzzsprout.com/627256 My podcast interview about our family’s experience with Nora is here: https://www.buzzsprout.com/627256/12509088-nora-bird-takes-flight
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What is a grief companion?A grief companion isn’t a therapist. A grief companion is a compassionate peer who will “walk alongside you” in the aftermath of loss, offering compassionate, non-judgemental listening. Some grief companions also offer practical support with tasks such as errands, light housekeeping, and rehoming possessions.
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What kinds of practical help do you provide?After loss support can cover a range of helping tasks. This can be any time after death, even years later. I can help go through belongings of the person who passed, assist in decision making about how to distribute/dispose of items, often finding creative ideas or meaningful places to distribute items, and arrange for disposal in practical and environmentally friendly ways whenever possible. Other concerns may include changing the name on bills, transferring car titles, or closing accounts. Especially in the first year after loss, grief is exhausting and everyday tasks can seem overwhelming. I’m happy to take on some of the burden or work alongside you and help you discover ways to continue moving forward through the changes and challenges you’re facing.
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What is the usual schedule for working with a grief companion?For practical and emotional support, I offer individual sessions for sharing-and-caring type work, where I am available to listen, empathize, and offer whatever practical support is needed at the time. These sessions can be scheduled whenever you need them, usually bi-weekly at first, and moving farther apart as time goes on.
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What is the Grief Companion Series?The Grief Companion Series is a focused 8-week exploration series for bereaved individuals/family designed to facilitate continued connection, memory-making, and development of comforting rituals and memorial practices after the loss of a loved one. Sessions are usually booked approximately two to three weeks apart to allow time for reflection and planning between meetings for this highly individualized offering.
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How do we start?Click on the contact page and fill out the form. We'll reach out to schedule a complimentary call to discuss your circumstances and the support you need right now, in the coming weeks, and in preparation for the future, and make a plan for going forward. What exactly the support looks like will depend on the your circumstances, your budget, and your plans.