TOOLBOX TIPS
This Month’s Tip:
Navigating end-of-life choices in Vermont is made easier by Wayfinders. This network is an independent, collaborative group of hospice nurses, case managers, death doulas, and social workers who help clients and their families navigate Vermont’s medical aid in dying law, Act 39. Vermont is one of only two states that allow nonresidents to access medical aid in dying. As a Wayfinder, and as a doula, I help with arranging caregivers; providing emotional support, lodging, and logistics; and, if needed, guiding the family on care of the body after death. Members of the Wayfinders network simplify complex information so that clients can spend time on what matters most to them.
—Kasey March
Posted 9/12/24
For those grieving, remember that your grief is valid, no matter how it manifests. Whether you choose to express it openly or keep it within, your feelings are important and deserve acknowledgment. Grief can be awkward and unpredictable, but how you navigate it is entirely up to you. You are not alone in your journey through grief.
One of the ways that I have cultivated space for those to grieve was by creating Vilomah, a Clubhouse group. Along with PhD candidate Sharon Turnage, LMSW, CASAC-T, I colead with parents who have experienced the loss of a child. We come together to share stories of resilience and growth after loss. Our group offers a safe space for healing and connection via a virtual club that allows people to drop in and talk.
—Janaris Lambright, HeartMath® certified trainer
Posted 7/25/24
I was gifted the Mourner’s Bill of Rights written by Dr. Alan D. Wolfelt through a child loss and bereavement support group I was a part of. (Thanks to George Mark Children’s House, which has helped me out greatly. It is the first freestanding pediatric palliative and hospice center in the United States.)
For myself, I have boiled down the 10 statements to two points or questions. If you have not willingly hurt yourself in expressing your grief—congratulations, your grief is valid! If you have not willingly hurt someone else in expressing your grief—congratulations, your grief is valid! Can grief be awkward for everyone involved when you are expressing it? Sure. Does it want to express itself at very odd times? Absolutely. But however or whenever you choose to express or not express that grief, it is up to you, and you have a right to grieve or not grieve as necessary. —Tylia Gardner
Posted 6/12/24
When visiting someone who’s imminently dying, I often bring hearty and healthful snacks for visitors and family. These include: Kind and other nut bars; homemade kolaches (sweet fruit pastries); pasties, peanut butter snacks; cheeses; and fruit—anything that’s comforting, satisfying, and doesn’t require any preparation. I also always have various candles, a few ultra-soft blankets, and squishables—plus cards and dominos to pass the time and offer a gentle distraction.—Jeni Wood
Posted 4/11/24
Showing up as a doula for someone who has experienced sudden death utilizes many of the skills you would use when working with someone who knows they are going to die. It requires you to be present with the individual or group in front of you. You can lead with a supportive presence and employ deep active listening. I often ask those mourning to tell me about their loved ones. There are ways we can work together by doing a memorial project or offering resources and referrals for grief support. —Melissa Ferrante
Posted 3/14/24
I had a time when a family asked me to speak with them without the dying person being present. Before I even met some members of the family, there were serious issues. In fact, the family was split in various ways. Some were accepting, some weren’t; some had their own ideas of what should happen, some were numbed out; some wanted to talk, and some didn’t. The history and dynamics were complicated. I found that asking questions that led to discussion was invaluable. Answering their questions led to more questions. We spoke about fears, regrets, thoughts about what was happening, and where things were headed. Prior to speaking with the family, I talked to my client and received their permission. It’s all about trust and relationship with the person you are supporting. —Karen Ostrowski
Posted 1/11/24
Recently a doula on Facebook asked if anyone had supported a client with dementia through Voluntarily Stopping Eating and Drinking (VSED). The Compassion and Choices website has a lot of valuable information.
Two doulas also shared their tips:
- This book, The VSED Handbook: A Practical Guide to Voluntarily Stopping Eating and Drinking, is a great resource. The author writes about her mother choosing VSED after being diagnosed with Alzheimer’s. It’s short, maybe 80 pages, but very comprehensive. —Kirstin Briones
- The video Jane’s VSED Journey is a great resource for VSED questions. —June Rzendzian Jacobson
Posted 12/14/23
For those looking to explain the end of life to those living with intellectual and developmental disabilities, there is an excellent resource called How to Break Bad News to People With Intellectual Disabilities: A Guide for Carers and Professionals. I find this book helpful in the work I do as a doula and as a social worker for people with varying disabilities. —Ashley Keagle
Posted 11/09/23
In the United States, every state administers a program for seniors under the Older Americans Act, in which the federal government provides money to states, which then funds local programs. The locally run services are usually known as Area Agencies on Aging, although they may be named by the regional entity and the nonprofit that administers the services. They can assist with transportation, Veteran services, dementia support, legal services, wellness services, and much more. Find your local AAA via the national website at Eldercare Locator. —Grace Parker
Posted 10/05/23
I highly, highly recommend watching the documentary Unknown: Cave of Bones on Netflix if you have access. It’s about a 200,000-year-old relative of ours who appears to have exhibited mortuary rituals. It made me think about every time I’ve closed someone’s eyes or folded their hands for the last time or placed an object into a casket—how ancient, how deeply rooted, how mysterious, sacred, and essential our role as caregivers to the dying and the dead is.—Sara E. Web
Posted 9/12/23
The best thing I have found when everyone in the room is anxious about something is to affirm that anxiety is common and it’s OK. Thank them for trusting you to come into such an emotionally charged, intimate space, and see if there are specific aspects of death they would like to talk through. Most of all, keep a calm, even demeanor and invite the energy in the room to match your own. —Lindsay Felt
Posted 7/17/23
Handling bedbugs is always a really difficult situation (and of course terrible when we’re trying to make the environment peaceful!). An exterminator is needed—at least two rounds of extermination, if not more, depending on the intensity—so the solution is not cheap.
As a doula, from my experience in hospice, I’ve worn an actual bedbug suit that covers your whole body, including your hair and shoes, and gloves. I also have bedbug spray that I put on the suit once it’s donned and spray on anything else I’m bringing in. I bring in only the bare minimum, preferably within a plastic bag, if possible. Take it off ASAP, throw out the suit, wash your clothes in hot water, and shower. —Mel Srolovitz
Posted 6/15/23
As a memory care administrator, I am often asked about the best time to acquire 24-hour supervision. I usually advise that when safety awareness is compromised, it’s time to consider care needs. But for those dealing with early onset Alzheimer’s, you need a plan before then. Young onset can often be frontotemporal in nature, which can cause dramatic changes in personality, including engaging in dangerous behavior. I recommend getting involved with The Association for Frontotemporal Degeneration or any association for dementia that correlates with the type of dementia one is dealing with. —Steph Cuzino
Posted 5/11/23
When creating a legacy project for children I suggest seeing what they like and starting there. You will get led in the right direction by the clients themselves. If they like music, maybe build a playlist of their favorite songs. If they like art, perhaps make projects for friends or family to receive as special future gifts on dates the clients will miss, like birthdays, holidays, etc. If they love sports and being active, you can create ideas around this. If you are looking for keepsakes for the family to remember them by, some ideas may be thumbprint necklaces, heartbeat recordings, group photos, and memories that were written together.—Sara Sedlacek Yates
Posted 4/13/23
I discovered this resource that could be helpful for doulas with clients who craft. The Loose Ends Project aims to match unfinished projects with volunteer finishers who complete and return the project to the intended loved one or their families. Crafts are often very personal, and this could be a good way to offer legacy project support. When crafters pass away midproject or are no longer able to carry on due to illness, they will often have a few unfinished items lying around. This program matches “project holders” with someone in their country who may be able to help complete the project. —Dani Mateos
Posted 3/09/23
A suggestion for working with teens or young adults that I just did with two young clients is creating puzzles. I noticed they liked doing puzzles while visiting and caring for their grandmother. We selected special family photos and then I ordered them as photo puzzles through forever.com. They loved the whole process, and the puzzles have so much meaning now. —Nancy Jean Rose
Posted 2/09/23
An idea to help people grieve when they live far from the deceased and may not be able to attend a memorial is to set up an altar or a dedicated area for grief within their own home. This way they can grieve in ways that feel safe and comforting. Additionally, I’ve used Flying Wish Paper with folks as a way to release and lift messages to loved ones. This tissue paper is used to write memories or wishes on and is then burnt. Because it is lightweight, it flies while burning. —Valerie Torrey
Posted 1/12/23
If you have a client who is significantly speech impaired or has aphasia, I suggest using a packet of papers or cards that say things like “I need water” or “I want to be moved.” I had a client that I did this with and she used it a lot. She just pointed at what she was trying to say, which allowed me to understand her. —Cynthia May Williams
Posted 12/12/22
In the event you are working with a client who hoards, there are some important things to know. Hoarding falls under the umbrella of obsessive-compulsive disorders and is closely related to anxiety disorders as well. It is complicated, and to remove things from their apartment will only significantly increase the anxiety. There is some sense of security in having every space filled. OCD is one of the most difficult mental disorders to treat. People who hoard are ashamed and embarrassed and protective of their “stuff.” It would be a good idea to get mental health professionals involved for a consultation if nothing else before you decide to take this on. Be careful, and if you go into the living space of a client who hoards, be sure to wear a mask and gloves for your own safety. —Sharon Schmidt
Posted 11/10/22
For those who may have a challenging time when a client has visitors, I would suggest assessing the client’s needs. The doula role in these scenarios could be one of a gatekeeper, prepping the visitor for what the client would like to be met with that day. The doula could take a different role should a visitor arrive during scheduled time, such as tidying the space or offering to make tea if that seems appropriate. The client might want privacy with visitors, and it’s OK to ask and excuse yourself.
Themes or topics could come up in conversation with a visitor that might be worth exploring deeper when the doula returns to one-on-one time with clients. Did it go how they hoped? Maybe they need suggestions on how to get what they want from their interactions with visitors. Do they engage in small talk to appease those who are uncomfortable with their nearing death, when what they really desire is deep, authentic connection? Find out how they felt in their interaction with their visitor.If the surroundings get a little raucous, a doula could suggest diplomatically that the client might benefit if the energy were to be brought back down. My mother’s hospice nurse did this by having my four energetic siblings and me visit our mom individually once she was actively dying, knowing my mother would likely have an easier time leaving her body if we shifted gears. I’m willing to bet there is a lot of valuable information in observing our clients with their visitors. —Lauren Butler
Posted 10/12/22
I want to share the card “game” called We’re Not Really Strangers. It’s a deck of cards with questions that prompt players to reflect on their experiences and relationships with others. I think the questions are in line with the spirit of EOL doula work, and it may be fruitful to play it with clients. I also recommend playing it with hospice patients, if you volunteer. —Victoria Echevarria
Posted 9/08/22
Since masks are required in many situations, when you’re working with clients, consider wearing a lip-reading mask. It will allow them to see your lips, and it’s better for sharing facial expressions. I use lip-reading masks in the hospital for my spiritual-care visits. —Barbara White
Posted 7/29/22
There is no playbook for any type of sudden death scenario; everyone and every situation is different and requires a lot of improvising. Religion and language often become the hardest elements to navigate and can be the biggest unintentional trigger. For example, let the grievers lay out the language to be used. If they avoid the use of “suicide,” then you do too. If that’s the word they use, then you can use it, but be aware of the context in which the grievers are using language so you don’t contradict them or appropriate their usage. —Katie Owrig
Posted 6/09/22
When I am putting together a celebration of life, I ask family members if there is anything they want to contribute—a speech, poetry, prayer, music. We brainstorm some shared activities for the gathering, like telling a memory and then lighting a candle. Another idea is to have guests write down memories of the person and attach them to branches that are then “planted” in a vase for all to read. Create a moment of togetherness by releasing native butterflies or ladybugs after a funeral. If the deceased had a collection, such as crystals or miniatures, with the family’s approval it could be shared with loved ones. Set up a table with some of their signature items, like cameras, jewelry, favorite candies—anything that might reflect the person’s interests. Think about sharing a part of that person. One could have photos available for people to take home, or a recipe, birdseed, flower seeds, or tree seedlings. At one funeral I went to, each person who spoke added a rock to a cairn in descending order of size. The family took it home and put it in their garden. —Kerith Earlix
Posted 5/12/22
I had a client I was caring for over an extended period who was afraid to die and resistant to conversations about her end of life. While I was sitting vigil in the hospital, she would scream out for help and her eyes would be full of terror. While I was using meditative music, aromatherapy massage, essential oils to support fear and anxiety, guiding family to encourage and comfort her—nothing was bringing her peace. Finally, I climbed into bed with her and just held her for hours, while we had on a chant recommended by a fellow doula playing quietly in the background. I spoke in whispers, encouraging words of letting go. I figured when it comes to being scared or anxious, we have one basic human need…to be held. So that is where my intuition took me. My sweet lady journeyed home two hours after I left her, with her husband and two daughters by her side. No more fear. No more pain. —Tracy Walsh Merriman
Posted 4/12/22
I’ve found that if I have a robust conversation with a potential client via phone or Zoom prior to our first in-person meeting, I have a better sense of the environment I will be entering. During this conversation, I ask specific questions that allow me to understand the client’s comfort level with current COVID-19 protocols, who else resides in the home, who else may be present during our meetings, and many other details. —Angela Laakso, Astral Dragonfly, LL
Posted 3/10/22
During COVID, planning and attending funerals, memorials, and other honoring and celebration of life ceremonies is challenging. Virtual memorial events (on platforms such as Zoom) are extremely impactful for family and community members, while also being relatively easy to organize. These events can honor a single individual or multiple people who have died over a given period, such as a group in an assisted living facility.
Having a welcoming host to run the event is very important, as is a clear agenda. A typical opening can start with a prayer, centering exercise, candle lighting, or quote read by the host or a family/community member. If the family has a spiritual or community leader they look to for leadership, that person can be woven into any agenda the family would like to create. The host can invite attendees to unmute themselves and share a story that uplifts the memory of the deceased and those grieving their loss. If it is a large gathering, consider identifying a few select individuals who might have the capacity to share a story—perhaps family members—and asking if they would like to speak.Young people are often excellent contributors to this process and tend to provide the important focus of legacy for these events.
Some memorials use Facebook Live, which allows only the event host to speak but provides the chat function for attendees to share comments, memories, and photos. We often play a slideshow of images of the deceased from birth to death with a musical selection chosen by the loved ones. Both are opportunities for family and community members to participate in planning, which can support their grieving processes. These virtual sessions provide space to amplify any final sentiments or legacy projects created by the deceased and their community and are also an effective time to share grief resources. We may find that virtual memorials continue beyond COVID as another way that end-of-life professionals can make a difference in the death and dying process. —Leigh Ann Roberts, Thresholding, LLC
Posted 2/10/22
I’d given up trying to make clients of the family whose elder man was dying. Over an 18-month period we had a handful of frank and promising phone calls, but nothing came of them.
So I was surprised and somewhat ambivalent when they contacted me yet again. He was dying. Would I sit with them that night? Perform a vigil? Resentful at this last-minute request, I questioned whether I cared enough to be useful, to drive an hour to an unfamiliar town, to people I’d been trying to serve for so long, when it now felt too late to do what I was trained to do.
Then I remembered the words of the visiting nurse who had cared for my father when he died. “You are taking great care of your dad,” she had said, and with that, she gave my sister and I the confidence to shepherd him through his last days. In honor of my father, I made the trip, equipped only with essential oils, poetry, and inner acceptance. I sat with them while we blessed him on his way, thanked him, and read him poems.
Death doula Sarah Kerr speaks of “lending (her) strength” to her clients. With no time to plan, and no emotional entanglement that gave me an agenda, I was simply there for them in the most basic way. Sitting. Sharing words of blessing and encouragement. Lending them my strength. —Frith Barbat
Posted 1/13/22
Contracts can feel awkward, especially when discussing fees for your services. My advice is to be flexible on the use of the word contract, a term that can feel rather legalese and therefore off-putting. Feel free to call it a “partnership agreement” or “memorandum of understanding” or to use other language that feels more comfortable for you as an end-of-life practitioner. I also suggest including general information about the role of an end-of-life practitioner along with the partnership agreement. This can outline what services you will and won’t cover. As this is an emotional time in people’s lives, having a document that both you and your client can easily refer back to will help define the terms you established together—allowing you both to benefit from the structure of the relationship. —Shannon McGinn-Corona
Posted 12/13/21
This Month’s Tip:
For those who may have a challenging time when a client has visitors, I would suggest assessing the client’s needs. The doula role in these scenarios could be one of a gatekeeper, prepping the visitor for what the client would like to be met with that day. The doula could take a different role should a visitor arrive during scheduled time, such as tidying the space or offering to make tea if that seems appropriate. The client might want privacy with visitors, and it’s OK to ask and excuse yourself.
Themes or topics could come up in conversation with a visitor that might be worth exploring deeper when the doula returns to one-on-one time with clients. Did it go how they hoped? Maybe they need suggestions on how to get what they want from their interactions with visitors. Do they engage in small talk to appease those who are uncomfortable with their nearing death, when what they really desire is deep, authentic connection? Find out how they felt in their interaction with their visitor.If the surroundings get a little raucous, a doula could suggest diplomatically that the client might benefit if the energy were to be brought back down. My mother’s hospice nurse did this by having my four energetic siblings and me visit our mom individually once she was actively dying, knowing my mother would likely have an easier time leaving her body if we shifted gears. I’m willing to bet there is a lot of valuable information in observing our clients with their visitors. —Lauren Butler
Posted 10/12/22
I want to share the card “game” called We’re Not Really Strangers. It’s a deck of cards with questions that prompt players to reflect on their experiences and relationships with others. I think the questions are in line with the spirit of EOL doula work, and it may be fruitful to play it with clients. I also recommend playing it with hospice patients, if you volunteer. —Victoria Echevarria
Posted 9/08/22
Since masks are required in many situations, when you’re working with clients, consider wearing a lip-reading mask. It will allow them to see your lips, and it’s better for sharing facial expressions. I use lip-reading masks in the hospital for my spiritual-care visits. —Barbara White
Posted 7/29/22
There is no playbook for any type of sudden death scenario; everyone and every situation is different and requires a lot of improvising. Religion and language often become the hardest elements to navigate and can be the biggest unintentional trigger. For example, let the grievers lay out the language to be used. If they avoid the use of “suicide,” then you do too. If that’s the word they use, then you can use it, but be aware of the context in which the grievers are using language so you don’t contradict them or appropriate their usage. —Katie Owrig
Posted 6/09/22
When I am putting together a celebration of life, I ask family members if there is anything they want to contribute—a speech, poetry, prayer, music. We brainstorm some shared activities for the gathering, like telling a memory and then lighting a candle. Another idea is to have guests write down memories of the person and attach them to branches that are then “planted” in a vase for all to read. Create a moment of togetherness by releasing native butterflies or ladybugs after a funeral. If the deceased had a collection, such as crystals or miniatures, with the family’s approval it could be shared with loved ones. Set up a table with some of their signature items, like cameras, jewelry, favorite candies—anything that might reflect the person’s interests. Think about sharing a part of that person. One could have photos available for people to take home, or a recipe, birdseed, flower seeds, or tree seedlings. At one funeral I went to, each person who spoke added a rock to a cairn in descending order of size. The family took it home and put it in their garden. —Kerith Earlix
Posted 5/12/22
I had a client I was caring for over an extended period who was afraid to die and resistant to conversations about her end of life. While I was sitting vigil in the hospital, she would scream out for help and her eyes would be full of terror. While I was using meditative music, aromatherapy massage, essential oils to support fear and anxiety, guiding family to encourage and comfort her—nothing was bringing her peace. Finally, I climbed into bed with her and just held her for hours, while we had on a chant recommended by a fellow doula playing quietly in the background. I spoke in whispers, encouraging words of letting go. I figured when it comes to being scared or anxious, we have one basic human need…to be held. So that is where my intuition took me. My sweet lady journeyed home two hours after I left her, with her husband and two daughters by her side. No more fear. No more pain. —Tracy Walsh Merriman
Posted 4/12/22
I’ve found that if I have a robust conversation with a potential client via phone or Zoom prior to our first in-person meeting, I have a better sense of the environment I will be entering. During this conversation, I ask specific questions that allow me to understand the client’s comfort level with current COVID-19 protocols, who else resides in the home, who else may be present during our meetings, and many other details. —Angela Laakso, Astral Dragonfly, LLC
Posted 3/10/22
During COVID, planning and attending funerals, memorials, and other honoring and celebration of life ceremonies is challenging. Virtual memorial events (on platforms such as Zoom) are extremely impactful for family and community members, while also being relatively easy to organize. These events can honor a single individual or multiple people who have died over a given period, such as a group in an assisted living facility.
Having a welcoming host to run the event is very important, as is a clear agenda. A typical opening can start with a prayer, centering exercise, candle lighting, or quote read by the host or a family/community member. If the family has a spiritual or community leader they look to for leadership, that person can be woven into any agenda the family would like to create. The host can invite attendees to unmute themselves and share a story that uplifts the memory of the deceased and those grieving their loss. If it is a large gathering, consider identifying a few select individuals who might have the capacity to share a story—perhaps family members—and asking if they would like to speak.Young people are often excellent contributors to this process and tend to provide the important focus of legacy for these events.
Some memorials use Facebook Live, which allows only the event host to speak but provides the chat function for attendees to share comments, memories, and photos. We often play a slideshow of images of the deceased from birth to death with a musical selection chosen by the loved ones. Both are opportunities for family and community members to participate in planning, which can support their grieving processes. These virtual sessions provide space to amplify any final sentiments or legacy projects created by the deceased and their community and are also an effective time to share grief resources. We may find that virtual memorials continue beyond COVID as another way that end-of-life professionals can make a difference in the death and dying process. —Leigh Ann Roberts, Thresholding, LLC
Posted 2/10/22
I’d given up trying to make clients of the family whose elder man was dying. Over an 18-month period we had a handful of frank and promising phone calls, but nothing came of them.
So I was surprised and somewhat ambivalent when they contacted me yet again. He was dying. Would I sit with them that night? Perform a vigil? Resentful at this last-minute request, I questioned whether I cared enough to be useful, to drive an hour to an unfamiliar town, to people I’d been trying to serve for so long, when it now felt too late to do what I was trained to do.
Then I remembered the words of the visiting nurse who had cared for my father when he died. “You are taking great care of your dad,” she had said, and with that, she gave my sister and I the confidence to shepherd him through his last days. In honor of my father, I made the trip, equipped only with essential oils, poetry, and inner acceptance. I sat with them while we blessed him on his way, thanked him, and read him poems.
Death doula Sarah Kerr speaks of “lending (her) strength” to her clients. With no time to plan, and no emotional entanglement that gave me an agenda, I was simply there for them in the most basic way. Sitting. Sharing words of blessing and encouragement. Lending them my strength. —Frith Barbat
Posted 1/13/22
Contracts can feel awkward, especially when discussing fees for your services. My advice is to be flexible on the use of the word contract, a term that can feel rather legalese and therefore off-putting. Feel free to call it a “partnership agreement” or “memorandum of understanding” or to use other language that feels more comfortable for you as an end-of-life practitioner. I also suggest including general information about the role of an end-of-life practitioner along with the partnership agreement. This can outline what services you will and won’t cover. As this is an emotional time in people’s lives, having a document that both you and your client can easily refer back to will help define the terms you established together—allowing you both to benefit from the structure of the relationship. —Shannon McGinn-Corona
Posted 12/13/21
