ASK INELDA
“Does anyone know if medical facilities would honor a decision to follow VSED, voluntarily stopping eating and drinking? The dying person already has a DNR in place.” —INELDA private Facebook group member
Educator Shelby Kirillin: While I haven’t had any personal experience with this situation, I have been told that most, not all, facilities struggle with honoring this request. They are under their own regulations and policies to provide nutrition to all their residents, and they see this as directly conflicting with that. There have been people who have added clauses to their advance directives that state, “If I can’t feed myself on my own, please do not feed me,” but I don’t know how well that is honored. Usually, I have heard that you have to “work” the system and just tell them that you or the dying person isn’t hungry and not directly say that anyone is doing VSED. I encourage you to explore additional research available on VSED. There are some amazing resources listed with VSED Research Northwest.
Posted: 12/12/24
“I feel like I need to know more about different diseases before I become a doula. Can I still do this work?” —Training participant
Educator Omni Kitts Ferrara: Yes, absolutely! As doulas, the people we support are the experts of their own experience. We may not understand the specifics of their disease process, but we can ask them to tell us about it. Of course, there are plenty of resources on the internet that can help us learn about a specific disease process. However, even if we looked up amyotrophic lateral sclerosis or metastasized breast cancer, what we would learn would be generalized. Every person dies in their own unique way, and their experience of a “disease” is also unique and specific for them. My lived understanding is to ask them about what it feels like to them, listen to their story, and support their choices.
Posted: 11/7/24
Can you share some information on agonal breathing? —Training participant
Educator Omni Kitts Ferrara: Agonal breathing is often a good sign of imminent death. It is ineffective breathing, and sometimes people call it a “fish breath,” mirroring a fish out of water. The breath is irregular, gasping, and shallow, and it may be accompanied by snorting, gurgling, or choking sounds. When agonal breathing begins, I have seen people go in minutes, and I have seen people go in hours. Sometimes secretion medicine is administered as the sound, often referred to as a death rattle, can be disturbing to those present. The medicine dries up secretions, but it also dries up all mucous membranes, which isn’t always comfortable.
One of the things in a person’s plan may be no drying, no secretion medication—or utilizing a vaporizer or moist mouth swabs, which can ease breathing. So we might just refer back to that. We are not there to police the situation, right? If they decide to use the secretion medication, it’s fine. That’s their choice.
Posted: 10/10/24
I am about to take on my first doula client. Is there a best way to document needs? —Email Inquiry
Educator Omni Kitts Ferrara: When I am first meeting with a person and their circle of care, my primary objective is to be present and to listen. I have a starter intake form, which helps me cover all my bases when we are talking about what’s important to them at the end of life. If I am on a virtual call, I save the transcript and later glean the information needed to create a summary of their dying choices. If I am in person, I do not take notes during the session. Afterward, I will write down their stated choices in a digital note, making sure to leave out any identifying information. I will file under initials only, with no date of birth and no address or anything else that could identify the patient.
Posted: 9/12/24
Is there a space to offer resources in this work? —Training participant
Educator Wilka Roig: We exist in a culture of death denial. While we are on this journey, we are ambassadors. Within this cultural context it is a revolution to dare to connect to something that is inherently ours. We are all experts when we allow ourselves to know what we know. To realize how much we know. To make conscious what we know. When we do so in community, we are so liberated and immediately connected with each other. In this commitment to this training, you are already doing that work. We have the freedom to have our own experience and truth about it.
You have a voice to educate, and that is…in this work. You can do talks at the library, write articles for publications, invite people to conversations—let’s learn from one another. You can create spaces that are more structured by offering talks on signs and symptoms with your community or by discussing the role of death doulas.
Posted: 7/25/24
How do I choose the best model for delivering advance care planning? —Training participant
Educator Valoria Walker: I don’t consider advance care planning (ACP) a “model” but a series of conversations to identify and honor medical choices one may face in an emergency. Advance directives are state-specific and can range from writing a note on paper to creating an online account. Most forms consist of naming the health care agent and identifying choices for life-sustaining treatments. The most essential tool for servicing clients is assessing their needs and wants. This assessment will provide the information needed to determine what documentation method will best serve the client. Helping the client and their families discuss who will communicate their choices if they cannot speak for themselves allows for one’s wishes to be documented before a medical emergency. ACP creates opportunities for shared decision-making conversations at any time, not just at the end of life. The best model is to become educated on the forms and methods used in the state where you will provide services.
Posted: 6/13/24
In what ways does a doula support grieving loved ones?—Q&A participant
Educator Shelby Kirillin: We do this in many ways. We begin by educating them about the grieving process. This might sound unnecessary, but many people have not experienced deep grief personally. It’s helpful for them to understand what this process can look like and to make sure that they’re aware of and can access needed resources. We also use legacy work—helping people define and create a project to memorialize the person who died. Whether it was started prior to the death or not, this work is a way we can help the loved ones have a more active role with their grief.
Posted: 4/11/24
I trained with a different doula organization. Can I still become an INELDA member?—Email inquiry
INELDA Membership Coordinator: Yes! Everyone who wants to become part of our growing community—to support our mission of providing accessible, equitable, and compassionate deathcare—is welcome to join INELDA as a member. We offer a three-tiered program, to suit your individual goals. And, depending on which tier you choose, you will have access to monthly Community Meetups, partnership offers, and our popular webinars.
Members who complete INELDA’s End-of-Life Doula Training also have access to services not available to those who attended a different organization for their doula education. INELDA-trained doulas are invited to join our active private Facebook group, for asynchronous engagement, and they’re encouraged to add a listing in our international doula directory. They may also attend our online monthly peer-mentoring sessions, for support and inspiration.
If you trained with another doula organization and would like to become INELDA-trained as well, we offer a Refresher Course, which will bridge the education you received with our INELDA curriculum.
To read more about all of the benefits available to INELDA members and INELDA-trained doulas, click here.
We look forward to welcoming you as a member of our community!
Posted: 3/14/24
Is there market saturation for doulas, and is it a concern?—Q&A participant
Educator Kris Kington-Barker: Right now what I’m hearing from the hospices that I speak with is that they are having so much difficulty getting volunteers. Since COVID they have lost a lot of their volunteers, and many of them ended up shutting down their volunteer programs because they couldn’t let volunteers go in—for two years. So it is a great time for a doula to volunteer, as a lot of hospices have never built back their volunteer programs to required numbers.
Additionally, we’re looking at a generation of baby boomers who are coming to age as older adults. We have 10,000 people turning 65 every day in this country. The idea that there isn’t going to be enough work for end-of-life doulas, given that100% of us are going to die—I think we’d be hard-pressed to say that there are too many people becoming doulas. The number of people with nobody to accompany them at end of life disputes that.
There have also been growing efforts by the National Hospice and Palliative Care Organization (NHPCO), through its End-of-Life Doula Advisory Council formed in 2018, to educate hospice and palliative care organizations about the benefits of EOLDs on care provider teams as not only volunteers but paid staff as well. Organizations like the Coalition to Transform Advanced Care (C-TAC), has been championing efforts through working with legislators, decision-makers, and advocates to change funding for patients and families impacted by serious illness and end-of-life care. All of this has helped increase awareness about end-of-life doulas, and there are still far more spaces where our role is unknown and unavailable.
Posted: 1/11/24
When I originally signed up for my training, I was thinking about becoming a doula for my family. But now I am getting the vibe that I shouldn’t be there in this capacity, and I hope to understand why. —Training participant
Educator Wilka Roig: Our stance is we are not doulas with loved ones or people we know—friends, friends of friends, parents, or any of these close relations. Being a doula is about remaining objective and not having a personal investment in the person’s rights, choices, and the course of their condition. With close relations, it can be hard to not be invested emotionally. When we go into those spaces we are loved ones, family members, or community members who “know some stuff”. We know we have some information that could be useful in the context. We can be people who love and support people in their process and hold some information, but it’s not quite possible to work as doulas specifically. It is out of the scope of what we do as doulas, and it’s best to refer them to another doula without a connection. Not to mention the fact that we ourselves could benefit from a doula’s support when our close relations are nearing end of life.
Posted: 12/13/23
I have a question regarding scope of practice. I have lots of different modalities. If I am engaged in work as a doula, but I’m also a certified nurse assistant and a massage therapist, when is it appropriate to bring in those other skills?—Training participant
Educator Garrett Drew Ellis: When you’re working as a doula, when is it appropriate—and when is it not appropriate—to offer multiple services? There are a number of modalities that really blur the lines, such as social work and therapy, and we suggest you stay away from those services. But there are other things that you can offer. You might specialize in something like Reiki or massage.
What we do suggest is that if you’re in private practice, your description of services, your contract, and your agreement should be very clear about how you’re showing up and what you’re offering on a given day. Also, whether you’re charging or working pro bono, all of that should be very, very clear and spelled out so that an individual knows what to expect. You can always offer multiple services such as chores, writing, and so on.
Editor’s note: Check out this article by doula and psychologist Michele Bograd about doula roles.
Posted: 11/09/23
Can you share more about what it means to rally at end of life? How do you walk someone through the process?—Training participant
Educator Valoria Walker: How we use end-of-life terminology is essential when educating our clients, patients, and the dying person’s support family. As doulas, we know what it means to “rally” at the end of life. We also understand that “terminal lucidity” is unique to each dying person, so talking to the primary caregivers is vital. Often, doulas are called into the dying process too late, and we need more time to educate the caregivers. Ideally, if family caregivers have been open to conversations about death and dying, education about “rallying at the end” may be an appreciated conversation. Otherwise, when we witness evidence of end-stage signs and symptoms, that is the time to talk about the possibility of terminal lucidity. So, back to terminology—terminal lucidity is the rallying or sudden awakening from the deep unconscious sleep one falls into before dying. Here’s a resourceful link on terminal lucidity, defined as the abrupt return of mental clarity for patients shortly before death.
Because each situation is different, supporting someone through the process comes from your intuition. You’ll educate the primary caregivers by telling them that “rallying” is common. It doesn’t mean healing has occurred with a return to an improved quality of life. But quite frankly, death is closer for their loved one. Sit still, be quiet, observe. You don’t have to do more than what you have already done.
Posted: 10/05/23
How do I balance the knowledge that I have as a hospice nurse with my role as an end-of-life doula? —Training participant
Educator Nicole Heidbreder: As someone who has worked as a hospice nurse, when my clients hire me I address and speak to the differences very explicitly. I’ll say, “It’s really important for me that you know that I am coming into your life, into your home, into your apartment, your house, whatever it is, as an end-of-life doula and that I’m not coming in as a private duty nurse. I’m here as an end-of-life doula, which means that things I do in my role as a hospice nurse—such as medication evaluation, medication suggestions, getting new products for you, and assessing pain management—will not be part of the services I provide to you.”
If they start to ask me medical questions, I’ll say, “It sounds like you have more questions about pain management and what other options are out there. Why don’t I work with you on writing a list of questions to specifically go through with your hospice nurse, so that when they come next time you have a really good list of questions to facilitate a conversation with them?” It’s all part of a collaborative team model.
Posted: 09/12/23
How do you navigate a situation when the plan of the dying person is not recognized? This happened to me recently with two family members. As a doula, where would my responsibility lie? —Training participant
Educator Omni Kitts Ferrara: When a family or person hires a doula, there’s a certain acceptance that comes with that decision. The dying person probably said all along, “I’m gonna have a doula for this. I would like this as I am dying.” The family themselves may be asking for doula support and for facilitation. So it is a different situation when you have a doula versus supporting family members. That said, I would advocate for the dying person and remind the family what this person wanted.
I’ve seen families agree to something, and then in the moment of experiencing their own grief, really feel like they can’t do it. The doula can help step forward and gently remind those present about the wishes of the dying person. Doulas have space, and they are not in the relationship that those loved ones are with the dying person—they just become the one who can keep the plan going in some regard, especially if the family members and loved ones just have a spontaneous reaction and can’t follow through.
Posted: 07/27/23
At the hospice I work at, there is not currently a role for end-of-life doulas. But I can see how my training would offer benefits and support at my hospice. How can I talk about offering more with my expanded skill set? —Training participant
Educator Omni Kitts Ferrara: When a family or person hires a doula, there’s a certain acceptance that comes with that decision. The dying person probably said all along, “I’m gonna have a doula for this. I would like this as I am dying.” The family themselves may be asking for doula support and for facilitation. So it is a different situation when you have a doula versus supporting family members. That said, I would advocate for the dying person and remind the family what this person wanted.
I’ve seen families agree to something, and then in the moment of experiencing their own grief, really feel like they can’t do it. The doula can help step forward and gently remind those present about the wishes of the dying person. Doulas have space, and they are not in the relationship that those loved ones are with the dying person—they just become the one who can keep the plan going in some regard, especially if the family members and loved ones just have a spontaneous reaction and can’t follow through.
Posted: 06/15/23
What would you say to somebody who’s going to be doing this work? At what point did you feel really ready to do it? And is it an ongoing thing that you’re constantly facing in this process? —Training Participant
Educator Wilka Roig: We are never going to feel “ready.” In order for us to be able to respond to what is there when doing this work, we need to come in with a beginner’s mind. How do we cultivate not knowing? We practice being comfortable with discomfort. One of the many beauties of this work is that not only does it give us permission, but it requires us to be fully present with ourselves and with what is arising at every moment with every breath. It is actually a huge relief. This work is a lot about just showing up fully and deeply knowing “I don’t have to be anywhere but here. I don’t have to think about anything but being here. I don’t have to feel anything except for whatever arises here.” It’s incredible.
Posted: 05/11/23
Can you share some experiences of when the religion of the family is different from the knowledge of the doula? How does one handle lack of familiarity with the rituals, practices, or prayers? —Training Participant
Educator Garrett Drew Ellis: Living in the religious space that I do, I have gone into spaces where religious practices were not my own. I will say I think there is an unnecessary fear of interacting with an individual spirituality. Research shows that spirituality is a huge part of people’s care at the end of life. And when it is not tended to, people sometimes have a harder time even with physical symptoms. So the doula has an opportunity to hold space for whatever the religious practice is. One of the best things I think you can do is ask questions and not be afraid of discussing them. More often than not, when people feel that you are curious and want to support them, they are more likely to be open to sharing. Depending on your level of comfort, you can support by reading a prayer, holding hands in a circle, or just being a quiet supporter. Sometimes we devalue just our presence, and sometimes our presence really is enough, and that’s all people want, even when there’s a very different culture and very different religion.
Posted: 04/13/23
What happens if a family member says you are not the right doula for their person? —Participant from 2023 training
Educator Valoria Walker: As a volunteer doula, ask the family member to help you understand why you are not the right doula. Identify the problem. Do a self-evaluation of the skills and tools you provide to their person. If you must discontinue your doula role, look at it as a positive learning experience. If the problem appears navigable, give it another effort by talking to the family. Consider including their person in the conversation to find a win-win situation for all involved. The ultimate goal is to give patient- and family-centered care. You can offer referrals to other doulas as an option for the family—this may be a better fit.
As a doula in private practice, if their person hired you, your commitment is to the person who has contracted you, regardless of the family dynamics. I’ve been in a situation where my client’s sister didn’t understand my role as an EOL doula. The primary caregiver’s family hired me to support the dying person. Regardless of the sister’s acceptance of my role, I remained consistent in my position to help the transitioning person. If a family member doesn’t want you there, please ask the person who hired you to speak for you, explaining why you are there. It may be a situation of lack of communication. Your obligation is to help the transitioning person and stay out of the family dynamics.
Posted: 3/09/23
I have a question about exploring questions about one’s life meaning with my client. How can I best support someone who is not willing to share and is angry about a recent death?— Participant in January’s training
Educator Marady Duran: We would typically only do this kind of work when our patients or our clients were in a space where they were ready. If you were working with someone who is still very angry, such as in denial of the death process, it wouldn’t even be appropriate for us to prompt that person with life meaning questions. I might choose to be in a more listening and receiving mode. Especially if the client is seeing me as an adversary or as someone to be upset with, it is better to offer active listening and to validate and seek to understand than to do any legacy or life meaning work.
Posted: 2/09/23
Can you speak to finding the line with your own emotions when doing end-of-life doula work? How do I balance my empathetic side with “being the container” for my client? —2022 training participant
Educator Shelby Kirillin: You are able to feel emotion, you are able to cry, as long as you’re not crying harder than the people in the room. They shouldn’t have to comfort us, but it’s OK to show emotion. What I find is that when I am serving, if I try to keep my emotions at bay, try to keep quiet from crying, try to keep from feeling, I use a counter energy to do that and am not able to be present. So, what I have found helpful is that when I feel those feelings and when I feel that sadness touching me, I acknowledge it and become present with it. I most often find it washes through me, but if I hold it at bay, it grows and gets bigger and casts a bigger shadow. It’s tuning in with myself, knowing that this is an emotional trigger, and then coming back to the person I am working with. Later I will follow up with doing the self-care of journaling about it and talking it through with a colleague or doula. I keep those healthy boundaries where it’s permeable enough to have an emotional connection, but not where I lose myself.
Posted: 1/12/23
Is it ever appropriate to “hand over” a family to another doula if you have to step away? I am thinking hypothetically about any direct conflicts that may be unhealthy for me to continue the work. —September training participant
Educator Lara Stewart-Panko: Many doulas work in pairs or collectives to ensure that clients can have their needs met when the hours involved may be too much for a single doula to work. Even for doulas who choose to work independently, having colleagues you can call on as backup when needed is wise. You may encounter scenarios where you choose to refer a client to another doula in order to honor boundaries or ethics, or you may need to refer them on due to something outside of your control, such as illness or injury. It is absolutely appropriate to connect clients with other doulas—or other services—if your well-being would be compromised if you were to continue to work with them.
Educator Shelby Kirillin To add to that, I have a clause in my contract that says “At any time either I can end service for the family or my client-mate and service.” So that is already built into the agreement.
Posted: 12/12/22
When does ritual come into play during the dying process? I am having a hard time distinguishing what is a ritual and what is the vigil. —Spring training participant
Educator Claudette Peterson: I am so glad you said that. A ritual can happen at any time. It can also be part of a vigil. In the wonderful book Hello, Goodbye: 75 Rituals for Times of Loss, Celebration, and Change by Day Schildkret, there are even three rituals when receiving a diagnosis. As people move closer to death, INELDA materials suggest a ritual for when people transition from seeking curative treatment to going on to hospice care and working on quality of life versus a cure. While we talked in class about the last breath ritual, there is never a wrong time for a ritual in my mind—it should have a clear beginning, a meaning or intention in the middle, and a definite ending and closure.
Posted: 11/10/22
Can you speak to the phenomena of “rallying” and when that may typically occur? —September training participant
Educator Shelby Kirillin: This is called terminal lucidity, and it normally occurs very close to someone’s death. While terminal lucidly is not overly common, it can present itself in the last few days of someone’s life. It presents itself as a wakefulness or sudden mental clarity that wasn’t present before. This can happen when someone has been noncommunicative or might not have eaten for many days. They may start grunting and then all of a sudden sit up and start communicating. They’ll start talking. I had one individual who just walked into the kitchen and asked for a doughnut.
There are a lot of theories around why it happens, but normally, when it is present, it is a sign that death is near. Sometimes families might proclaim, “It’s a miracle! They’re not dying.” I try to heed this off by providing education early in our work together—for example, by asking, “Would you like me to tell you about some things you might expect to see as your loved one is dying?” I can’t explain the phenomena and that not everybody goes through it. It can last from a few minutes to several hours but it will go as quickly as it came, so I encourage the loved ones to take advantage of this gift by encouraging people to say what they want to say.
Posted: 10/12/22
I have a degenerative disease, and as I train to become a doula, I am concerned that people will question how I am able to help them when they see my disability. —June workshop participant
Educator Wilka Roig: I don’t think that there is any way we can say how someone is going to act when we step into a role of service. We are showing up with care and compassion and knowledge—everything else is secondary. People can trust more and relate more to knowing that someone else has gone through or is going through a human challenge.
Educator Lara Stewart-Panko: What was coming up for me when you asked this question was the value of peer support. I wonder if there is an opportunity for you to connect with prospective clients that have this same disability and if in some ways this would actually support their comfort and limit your concerns.
Posted: 9/8/22
I live outside the United States, and I’m doing this work where there is only one other death doula nearby. The general feedback she’s getting is that we don’t need doulas. How do we fit into places that may feel doulas are not needed? —April training participant
Educator Jamie: One way doulas make headway in the United States is by building relationships with institutions—letting them know that doulas can provide relief for care-team members. A lot is happening in the patient’s room. For example, nurses sometimes try to comfort and educate loved ones while also handling patient care, which can be overwhelming and time-consuming for all involved. Doulas can become part of the team and relieve the burden. In the United States, the average person spends around three hours with their hospice team for a whole week! So there’s a lot of space for you to enter to provide support and care.
Additionally, medical professionals must punch a clock and go through specific routines and checklists, which may also limit the time they can spend with the patient and their loved ones. Doulas don’t have to meet those exact requirements, so they have more time to work with clients on rituals, 11th-hour vigil sitting, and the like. Nevertheless, there’s still a lot of work to do.
Posted: 7/29/22
I have some anxiety around missing the last breath. Does it get easier to start recognizing when someone is about to die?—Participant from February training
Educator Garrett Ellis: I think it starts to become more intuitive. My ability to feel and get a sense of what is happening in the room has grown. I certainly cannot predict death, but you begin to get a sense of things changing in the atmosphere. Every death I have witnessed has been different. Use the signs and symptoms taught as guideposts and know that the speed of death is different for every single person.
Educator Wilka Roig: The signs and symptoms of active dying are not “there for us” to know when the final breath is going to happen. It is not a clock for us to start a countdown. The understanding of the process is there so we can help normalize and ease the anxiety of the loved ones. The signs and symptoms for an individual dying when no disease is present can go on for months, so regardless of when it may happen, we as doulas are there to support the dignity and humanity of the dying person. Also, while some would prefer to die surrounded by loved ones, a dying person may choose to take their last breath when no one is present. So it is important to remind loved ones of this, and to give some spaces of alone time to those who are dying in case their final breath is to be taken while alone.
Posted: 6/09/22
You spoke of healing touch during training. Can you elaborate a little more about how this can be used as a doula? —March training participant
Educator Marady Duran: This profession often brings in a lot of energy workers and other modalities of therapeutic healing touch workers. I took a specific course that focused on healing touch for people at end of life. I believe there is a lot of value to simple, caring healing touch that helps you build a strong connection with your clients and is also reassuring for many people. However, I believe having consent from clients is very important before touching them. With that in mind, holding someone’s hand during vigil, placing a hand on the shoulder, or even holding the bottoms of people’s feet is something that anyone can do even if they are not formally trained and can bring much comfort.
Posted: 5/12/22
How do you reconcile conflicting wishes of family members and wishes of the dying person? How does this fit into an advance care directive and the legal documents that might exist associated with the care of this dying person, especially when the individual may not be able to communicate verbally anymore? — February training participant
Trainer Valoria Walker: First, depending on what state you live in, an advance directive is a legal document, and sometimes it is not, so know your state’s rules about advance directives. In the state of Maryland, if you do not have an advance directive and are not able to speak for yourself or do not have the cognitive capacity to express your choices for life-sustaining treatments, the order of decision is court-ordered guardian, spouse/partner, adult children, parents, adult siblings, then other relatives or friends.
Having an advance directive helps the family avoid making uninformed last-minute decisions and honors patients’ clear choices about what type of treatment they want or may not want to sustain their lives. The dying person is the priority, and physicians will follow the written advance directive. Not all states have laws authorizing these orders. It is highly recommended that you speak to your physician if you plan to complete an advance directive. April 16 is National Healthcare Decision Day, a day designed to encourage adults to create an advance care plan to prepare for medical crises.
Educating family members about the signs and symptoms at each stage of the dying process is essential. If there is a conflict between family members and honoring the dying person’s
wishes, a gentle conversation is needed to help family members understand that in their desire not to allow their loved ones to die peacefully, they are prolonging their loved one’s pain and suffering.
I recommend looking back at the past two years and considering how many patients were impacted by COVID-19 without an advance directive. The time to prepare for a medical crisis is not during the medical crisis, when emotions are already unstable, but when people can speak for themselves and have the autonomy to make informed decisions and communicate to their family members about what care they want at the end of life.
Lastly, circumstances around death are not always black and white, so having a health care agent who can assess the situation to determine how to best honor the dying person is crucial. It is vital that we all have our wishes honored, so choose your health care agent wisely.
Posted: 4/12/22
I am wondering about the importance and the meaning of having a doula who shares the spiritual traditions of the person who is dying. How important is it for doulas to have the same faith tradition as their clients or to help facilitate faith leaders to come to sit with clients bedside? – Participant in January training
Instructor Nicole Heidbreder: We have had people come through the doula training who specifically want to go back and work within their faith communities—there is a definite niche for it. I would only add that if you feel that proclivity, I encourage you to make it clear on your website or within your beginning conversations with people. As for bringing in people from the dying person’s spiritual community, this happens quite a lot. If you hope to have a private practice, it is important to have a lot of community resources for the people you are working with. You need to take a village approach, as the doula cannot always meet the needs of each dying person and can help refer some of those services; plus, having those additional support services are an important part of your self-care.
Please submit questions to [email protected]
Posted: 3/10/22
I have a caretaker inclination, and I have been thinking about how to create healthy boundaries and habits for my practice. Do you have any insights on self-care work to create healthy habits? – January training Q&A session
Trainer Nicole Heidbreder: I have so much to share! First, really try to be mindful to stay within your scope of practice. One of the clearest signs of bad or maladaptive self-care habits is going outside of your scope of practice because you feel you need to help someone. That is the beginning of overgiving, overdoing, and not having clear boundaries. You can also always remind yourself that you are part of a community model. You are not the only one taking care of your dying clients. They have caretakers, family, neighbors, friends, loved ones—there are others in their community. Remember that there are other people who can help bear the burden to avoid your burnout. Lastly, knowing the three-phase model of INELDA training and having a conversation with your client at the start of your relationship will help set expectations to ensure your work doesn’t go beyond scope.
Posted: 2/10/22
Are we allowed to be a client’s health care power of attorney (POA)? I am meeting with a client who has no immediate person she can trust to honor her decisions should she become incapacitated. What advice can I give her in finding a person to appoint? Am I allowed to say yes if she asks me?– H.L.
Trainer Kris Kington-Barker: As a doula, one of the more supportive ways we assist our clients is to hold ourselves back from becoming the solution without fully taking the time to explore both the situation and the options that may not have been considered. Do they have a written advance health care directive (AHCD)? Have they actually engaged in conversations about their end-of-life decisions with others since documenting their choices? With whom, and what was the outcome?
When leaning into this conversation with clients, we often find one of the following situations taking place:
- They don’t have a documented AHCD
- They don’t know how to begin the conversation
- They don’t know whom to ask to be their health care POA
- They have asked a close relative, but that person was not the best person to select
These conversations and considerations can open some rich and important discussions for our clients, and an EOL doula can assist in this process. The short answer is that a client can choose to name anyone (including a doula) as their health care POA. As long as it is properly documented and witnessed as an AHCD, POLST, or MOLST (physician orders for life-sustaining treatment, medical orders for life-sustaining treatment), it is legal. (Depending on the state the document may need to be notarized.) If presented, the document would allow the designated individual to speak for clients in lieu of their ability to speak for themselves.
Posted: 1/13/22
I am still unclear on the timeline of doing doula work. Can you lay out a schedule based on the three months out from someone’s predicted death? How much are we trying to cover, and how often are we meeting? – B.S.M.
Trainer Shelby Kirillin: I liken this time period to the birth world. When people are first pregnant, they see a health care provider once a month. As they advance in their pregnancy, visits happen every other week, then weekly, then daily. It’s very much the same with the dying process, and yet every case is different. One example is when clients are far out, I may see them just once a month. The weeks that I am not seeing them, I may send a text and a note to say when we will see each other again. As they progress in their dying, it may be every other week and then weekly. You get a feeling of it from their symptoms, and sometimes I ask them how often they want me there. I always check in before I visit to make sure the clients still want me there. I usually set aside at least an hour for each visit. This will also depend on how you shape your services and whether you’re offering hourly rates or bundled services. The biggest part of being an end-of-life doula is being flexible and knowing that each client will have different needs. What are the care demands on your clients? Do they require legacy and planning? What is the physical and emotional status of the primary caregivers?
Posted: 12/13/21
Can you speak to the phenomena of “rallying” and when that may typically occur? —September training participant
Educator Shelby Kirillin: This is called terminal lucidity, and it normally occurs very close to someone’s death. While terminal lucidly is not overly common, it can present itself in the last few days of someone’s life. It presents itself as a wakefulness or sudden mental clarity that wasn’t present before. This can happen when someone has been noncommunicative or might not have eaten for many days. They may start grunting and then all of a sudden sit up and start communicating. They’ll start talking. I had one individual who just walked into the kitchen and asked for a doughnut.
There are a lot of theories around why it happens, but normally, when it is present, it is a sign that death is near. Sometimes families might proclaim, “It’s a miracle! They’re not dying.” I try to heed this off by providing education early in our work together—for example, by asking, “Would you like me to tell you about some things you might expect to see as your loved one is dying?” I can’t explain the phenomena and that not everybody goes through it. It can last from a few minutes to several hours but it will go as quickly as it came, so I encourage the loved ones to take advantage of this gift by encouraging people to say what they want to say.
Posted: 10/12/22
I have a degenerative disease, and as I train to become a doula, I am concerned that people will question how I am able to help them when they see my disability. —June workshop participant
Educator Wilka Roig: I don’t think that there is any way we can say how someone is going to act when we step into a role of service. We are showing up with care and compassion and knowledge—everything else is secondary. People can trust more and relate more to knowing that someone else has gone through or is going through a human challenge.
Educator Lara Stewart-Panko: What was coming up for me when you asked this question was the value of peer support. I wonder if there is an opportunity for you to connect with prospective clients that have this same disability and if in some ways this would actually support their comfort and limit your concerns.
Posted: 9/8/22
I live outside the United States, and I’m doing this work where there is only one other death doula nearby. The general feedback she’s getting is that we don’t need doulas. How do we fit into places that may feel doulas are not needed? —April, training participant
Educator Jamie: One way doulas make headway in the United States is by building relationships with institutions—letting them know that doulas can provide relief for care-team members. A lot is happening in the patient’s room. For example, nurses sometimes try to comfort and educate loved ones while also handling patient care, which can be overwhelming and time-consuming for all involved. Doulas can become part of the team and relieve the burden. In the United States, the average person spends around three hours with their hospice team for a whole week! So there’s a lot of space for you to enter to provide support and care.
Additionally, medical professionals must punch a clock and go through specific routines and checklists, which may also limit the time they can spend with the patient and their loved ones. Doulas don’t have to meet those exact requirements, so they have more time to work with clients on rituals, 11th-hour vigil sitting, and the like. Nevertheless, there’s still a lot of work to do.
Posted: 7/29/22
I have some anxiety around missing the last breath. Does it get easier to start recognizing when someone is about to die? —Participant from February training
Educator Garrett Ellis: I think it starts to become more intuitive. My ability to feel and get a sense of what is happening in the room has grown. I certainly cannot predict death, but you begin to get a sense of things changing in the atmosphere. Every death I have witnessed has been different. Use the signs and symptoms taught as guideposts and know that the speed of death is different for every single person.
Educator Wilka Roig: The signs and symptoms of active dying are not “there for us” to know when the final breath is going to happen. It is not a clock for us to start a countdown. The understanding of the process is there so we can help normalize and ease the anxiety of the loved ones. The signs and symptoms for an individual dying when no disease is present can go on for months, so regardless of when it may happen, we as doulas are there to support the dignity and humanity of the dying person. Also, while some would prefer to die surrounded by loved ones, a dying person may choose to take their last breath when no one is present. So it is important to remind loved ones of this, and to give some spaces of alone time to those who are dying in case their final breath is to be taken while alone.
Posted: 6/09/22
You spoke of healing touch during training. Can you elaborate a little more about how this can be used as a doula? —March training participant
Educator Marady Duran: This profession often brings in a lot of energy workers and other modalities of therapeutic healing touch workers. I took a specific course that focused on healing touch for people at end of life. I believe there is a lot of value to simple, caring healing touch that helps you build a strong connection with your clients and is also reassuring for many people. However, I believe having consent from clients is very important before touching them. With that in mind, holding someone’s hand during vigil, placing a hand on the shoulder, or even holding the bottoms of people’s feet is something that anyone can do even if they are not formally trained and can bring much comfort.
Posted: 5/12/22
How do you reconcile conflicting wishes of family members and wishes of the dying person? How does this fit into an advance care directive and the legal documents that might exist associated with the care of this dying person, especially when the individual may not be able to communicate verbally anymore? —February training participant
Trainer Valoria Walker: First, depending on what state you live in, an advance directive is a legal document, and sometimes it is not, so know your state’s rules about advance directives. In the state of Maryland, if you do not have an advance directive and are not able to speak for yourself or do not have the cognitive capacity to express your choices for life-sustaining treatments, the order of decision is court-ordered guardian, spouse/partner, adult children, parents, adult siblings, then other relatives or friends.
Having an advance directive helps the family avoid making uninformed last-minute decisions and honors patients’ clear choices about what type of treatment they want or may not want to sustain their lives. The dying person is the priority, and physicians will follow the written advance directive. Not all states have laws authorizing these orders. It is highly recommended that you speak to your physician if you plan to complete an advance directive. April 16 is National Healthcare Decision Day, a day designed to encourage adults to create an advance care plan to prepare for medical crises.
Educating family members about the signs and symptoms at each stage of the dying process is essential. If there is a conflict between family members and honoring the dying person’s
wishes, a gentle conversation is needed to help family members understand that in their desire not to allow their loved ones to die peacefully, they are prolonging their loved one’s pain and suffering.
I recommend looking back at the past two years and considering how many patients were impacted by COVID-19 without an advance directive. The time to prepare for a medical crisis is not during the medical crisis, when emotions are already unstable, but when people can speak for themselves and have the autonomy to make informed decisions and communicate to their family members about what care they want at the end of life.
Lastly, circumstances around death are not always black and white, so having a health care agent who can assess the situation to determine how to best honor the dying person is crucial. It is vital that we all have our wishes honored, so choose your health care agent wisely.
Posted: 4/12/22
I am wondering about the importance and the meaning of having a doula who shares the spiritual traditions of the person who is dying. How important is it for doulas to have the same faith tradition as their clients or to help facilitate faith leaders to come to sit with clients bedside?—Participant in January training
Instructor Nicole Heidbreder: We have had people come through the doula training who specifically want to go back and work within their faith communities—there is a definite niche for it. I would only add that if you feel that proclivity, I encourage you to make it clear on your website or within your beginning conversations with people. As for bringing in people from the dying person’s spiritual community, this happens quite a lot. If you hope to have a private practice, it is important to have a lot of community resources for the people you are working with. You need to take a village approach, as the doula cannot always meet the needs of each dying person and can help refer some of those services; plus, having those additional support services are an important part of your self-care.
Please submit questions to [email protected]
Posted: 3/10/22
I have a caretaker inclination, and I have been thinking about how to create healthy boundaries and habits for my practice. Do you have any insights on self-care work to create healthy habits? —January training Q&A session
Trainer Nicole Heidbreder: I have so much to share! First, really try to be mindful to stay within your scope of practice. One of the clearest signs of bad or maladaptive self-care habits is going outside of your scope of practice because you feel you need to help someone. That is the beginning of overgiving, overdoing, and not having clear boundaries. You can also always remind yourself that you are part of a community model. You are not the only one taking care of your dying clients. They have caretakers, family, neighbors, friends, loved ones—there are others in their community. Remember that there are other people who can help bear the burden to avoid your burnout. Lastly, knowing the three-phase model of INELDA training and having a conversation with your client at the start of your relationship will help set expectations to ensure your work doesn’t go beyond scope.
Posted: 2/10/22
Are we allowed to be a client’s health care power of attorney (POA)? I am meeting with a client who has no immediate person she can trust to honor her decisions should she become incapacitated. What advice can I give her in finding a person to appoint? Am I allowed to say yes if she asks me? —H.L.
Trainer Kris Kington-Barker: As a doula, one of the more supportive ways we assist our clients is to hold ourselves back from becoming the solution without fully taking the time to explore both the situation and the options that may not have been considered. Do they have a written advance health care directive (AHCD)? Have they actually engaged in conversations about their end-of-life decisions with others since documenting their choices? With whom, and what was the outcome?
When leaning into this conversation with clients, we often find one of the following situations taking place:
- They don’t have a documented AHCD
- They don’t know how to begin the conversation
- They don’t know whom to ask to be their health care POA
- They have asked a close relative, but that person was not the best person to select
These conversations and considerations can open some rich and important discussions for our clients, and an EOL doula can assist in this process. The short answer is that a client can choose to name anyone (including a doula) as their health care POA. As long as it is properly documented and witnessed as an AHCD, POLST, or MOLST (physician orders for life-sustaining treatment, medical orders for life-sustaining treatment), it is legal. (Depending on the state the document may need to be notarized.) If presented, the document would allow the designated individual to speak for clients in lieu of their ability to speak for themselves.
Posted: 1/13/22
I am still unclear on the timeline of doing doula work. Can you lay out a schedule based on three months out from someone’s predicted death? How much are we trying to cover, and how often are we meeting? —B.S.M.
Trainer Shelby Kirillin: I liken this time period to the birth world. When people are first pregnant, they see a health care provider once a month. As they advance in their pregnancy, visits happen every other week, then weekly, then daily. It’s very much the same with the dying process, and yet every case is different. One example is when clients are far out, I may see them just once a month. The weeks that I am not seeing them, I may send a text and a note to say when we will see each other again. As they progress in their dying, it may be every other week and then weekly. You get a feeling of it from their symptoms, and sometimes I ask them how often they want me there. I always check in before I visit to make sure the clients still want me there. I usually set aside at least an hour for each visit. This will also depend on how you shape your services and whether you’re offering hourly rates or bundled services. The biggest part of being an end-of-life doula is being flexible and knowing that each client will have different needs. What are the care demands on your clients? Do they require legacy and planning? What is the physical and emotional status of the primary caregivers?