Comforting Closure—Conversations with a Death Doula is a series of podcasts by end-of-life doula Traci Arieli. Recently, Traci interviewed Patty Brennan for a conversation about her book, Into the Fog: Navigating My Mother’s Journey through Dementia. The book is both a memoir and a guide for families in which the author recounts lessons learned the hard way.

Watch Podcast: Interview with author Patty Brennan: Inside the Dementia Journey. And be sure to check out Traci’s other podcasts. She brings an engaging and gracious energy to her podcasts.

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How does your facility support residents and loved ones who are dying?

• How does your care change once residents are on hospice?
• How do staff members know which residents are on hospice?
• Do you educate residents and their families about end-of-life issues and the dying process? Who is responsible for this?
• How do you support grieving staff members? Who does this?
• How do you support residents after a death?
• Do you offer a send-off ritual after a resident’s death?
• Do you maintain a public memorial space?
• Do you educate residents and families on the realities of CPR for people with their health status? How many of your residents are “full code”?
• Do physicians and nurses routinely check POLST orders before doing CPR, tracheal tubes, feeding tubes, hospitalization, or other medical interventions? (NOTE: Medical caregivers are mandated to check orders by state regulations. Further, any changes in the patient’s condition may trigger a mandatory review and update of their POLST.)
• For patients on hospice, are staff members encouraged to call the hospice team when medical questions arise?
• Have you checked in with your hospice teams to learn what problems they typically encounter when coordinating with staff at your facility?
• Are comfort medications administered on schedule, PRN, or both?

How does the facility help healthy residents prepare for death?

• Do you have a “Living Well, Dying Well” discussion group for residents?
• Do you support residents in preparing Advance Directives?

How does the facility work with end-of-life doulas?

• Have you ever had an end-of-life doula on staff? What were the positives and negatives in the opinion of staff members?
• Did the board invite staff leaders’ thoughts about the need for an end-of-life doula?
• Do staff members support having an end-of-life doula on board?
• Are end-of-life doulas expected or encouraged to chart, work specific hours, or visit a certain number of residents per day?
• To what extent is the doula expected to be available outside of their regular hours?
• To what extent may the doula set their own work schedule and tasks?
• Are patients’ pain management orders shared with the doula?
• May the doula contact hospice directly if the patient shows symptoms of distress?
• May the doula communicate patient care needs with the patient’s nurse directly?

Download this tool as PDF.

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I found myself grabbing the yellow highlighter repeatedly as I read Jane Callahan’s new gem of a guidebook. The author weaves together her own life experience and client stories while synthesizing an overview of end-of-life issues, decision points, and resources. It makes for an informative and engaging read that brings the nitty-gritty of end-of-life doula work to life.

A repeated theme throughout the book is that we don’t know what we don’t know or need to know. This idea resonates with my decades-long perception that, when it comes to navigating our choices in the face of a major life transition, it is not possible to know all the answers, but there is power in learning to ask the right questions. Doulas can help clients identify the questions they should be asking if they want to make informed decisions, prevent trauma, and have agency over their experience. This is what empowerment looks like.

Communication and advocacy are a big part of the doula’s role and a section on end-of-life conversations from the doctor’s perspective was especially helpful, highlighting the work of Dr. Matthew Tyler (HowToTrainYourDoctor.com). His model uses the following framework: helping the person understand their disease and how it will play out, explaining what their options are, asking what matters most to them, and building a plan around that. Jane then outlines a series of essential questions for the person’s care team to create the plan. I believe these questions will provide the structure needed to guide difficult conversations, for both doulas and families.

A section on legacy planning includes a wide range of legacy project ideas and related resources that doulas can use to support clients in the creative process. Legacy work is the outward manifestation of the life review process, answering the questions, Why was I put here? What am I leaving behind? What did I learn? How did I matter? What have I left unresolved?

Here are just a couple of the resources Jane shares:

• Share the Care: How to organize a group to care for someone who is seriously ill, by Cappy Capossela and Sheila Warnock
• Death Nesting, by Anne-Marie Keppel and Dr. Karen Wyatt

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Tips for Getting Clients Comfortable in Bed at the End of Life

Palliative positioning has the power to reduce a pain score dramatically, and it’s a skill that anyone can learn. As a massage therapist working in hospice care, I’ve learned that most of what I do to help people is very simple. It starts with taking the work out of lying down.

Tip #1. Start by noticing whether your client looks comfortable. If a client is verbal, of course, we can ask about their comfort, though people will often say they are “fine” when observation suggests otherwise. My assessment of comfort includes nonverbal signs of effort or strain, including facial expression, respirations faster than 20 per minute, and fidgeting.

Tip #2. Check the hips. Clients often slip toward the foot of the bed, causing the bend of the bed to occur in the middle of the spine. If this is the case, have the client scoot toward the head of the bed if they’re able, so that the hips are aligned with the bend. Seek help from family or care staff as needed.

Tip #3. If you suspect the client is still not comfortable, invite them to try something different. My script for this: “I’m noticing X, would you be willing to try Y to see if we can get you more comfortable?” The X might be “I’m noticing that your arms don’t have a place to rest,” and the Y might be “Would you be willing to try pillows under your arms to see if you like that better?”

I place the items, and then I ask, “Is this better or worse?” Keeping our language neutral allows each client to be the expert in his or her own comfort. If the client is nonverbal, I use this same script, watching for nonverbal indications of improvement (softening of the face, slowed respirations, stillness of the body).

Tip #4. Use available materials to fill empty space. Every body part should have a soft surface to rest on. Dangling arms are often more comfortable with a pillow under each elbow. The knees, ankles and low back may feel better with a pillow under each leg.

I use pillows of different sizes, borrowing small decorative pillows when needed (these can be covered in a pillowcase for protection). Towels can be folded or rolled to create padding that is customized to size, and rolled washcloths can fill tiny spaces such as the back of the neck or curve of the fingers.

Tip #5. Stay open to learning as you improve your palliative positioning skills. I am constantly learning new tricks from clients, family caregivers, home health aides, restorative yoga teachers, and other massage therapists. Chapter 4 of Palliative Touch: Massage for People at the End of Life describes palliative positioning for people in recliners, wheelchairs, hospital beds, and other furniture. Visit www.finaltouchtraining.com for more information.

Author

Cindy Spence and Susan Gee teach Palliative Massage for People at the End of Life, a three-day course for massage therapists, end-of-life doulas, and other healthcare professionals. Last year, Cindy conducted a very informative webinar for Lifespan Doulas on Comfort Massage at End of Life. Check it out to get a flavor of her teaching.

Photo copyright Final Touch Training © 2024

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Recently, I was conducting a webinar for end-of-life doulas (EOLDs) when someone in the audience shared that Medical Aid in Dying (MAiD) clients were her specialty and that she travels to other states to “do it.” As MAiD was not the theme of our webinar, I did not pursue questioning her as to whether she personally handles the life-ending pharmaceuticals and what exactly it is that she does. Coincidentally, within days, Karen Reppen, a seasoned community deathcare advocate, EOLD, and National End-of-Life Alliance (NEDA) board member, reached out to me voicing her concern about language related to MAiD in the doula scope of practice. As more states get on board with legalizing MAiD, I expect that the doula’s role in relation to the practice will become increasingly controversial.

Are doulas clinicians?

The American Clinicians Academy of Medical Aid in Dying (ACAMAiD) offers abundant resources on the practice of MAiD and a free online MAiD training for doulas. They believe that:

“The preparations and procedures around aid in dying can be complex and more easily managed by a knowledgeable clinician, rather than a stressed-out but well-intentioned loved one.”

This makes sense. The problem is doulas are not (and should not become) clinicians. Doulas who choose to support clients through this decision and process should become knowledgeable about the logistics and best practices involved and the thorough ACAMAiD training will prepare you to do so. However, in the recorded webinar re-enactment of a medically assisted death, the doula is shown taking the lead in the process. She mixes the deadly drugs, brings them to her client’s bedside, coaches her how to drink the solution, and puts the glass into the person’s hands. Later, the doula observes the person has stopped breathing, checks for a pulse, listens for a heartbeat with a stethoscope, and informs the two daughters that their mother has died. (There is no mention of calling in hospice or the medical examiner/coroner who would be legally able to pronounce a death.) She states, “Doulas are in the perfect position to do this—this is what we do—we do death, and we do it pretty well.” In the event something goes wrong (e.g., awakening, or failure to fall asleep within thirty minutes or die within four hours of ingesting the drugs), doulas are further instructed to be prepared to help sedate the patient by administering phenobarbital via rectal suppository. Does anyone really think these actions are consistent with the doula model of care?

Proposed amendments to the doula scope of practice

The founders of NEDA tried to get out ahead of this issue back in 2017 when NEDA was formed. We intended to proactively address the misperception that “death doulas” are somehow bringers of death or inextricably linked to the practice of MAiD. There was concern that we would face pushback on our emerging profession if the two were linked in people’s minds. I believe this concern remains valid. In 2016, with the founding of Lifespan Doulas, I adapted and rewrote the established scope of practice governing birth and postpartum doulas to include issues specific to EOLDs. Two tenets of the scope are relevant to this discussion:

1. As non-medical care providers, doulas do not perform clinical tasks (e.g., monitor vital signs, administer medication, prescribe treatments).
2. Doulas do not facilitate medical aid-in-dying but may be present per client request.

It is imperative for EOLDs to understand that in states where MAiD is legal, there is a requirement that the individual must self-administer or self-ingest the prescribed drugs through the gastro-intestinal tract. This means that the person seeking to end their life through MAiD must be capable of physically taking the medication themselves. There can be no question that doulas should not administer the meds. What is in question is whether the language in the scope of practice is sufficiently clear on the issue of MAiD. For example, Karen asks, “How do ‘presence’ and ‘facilitation’ differ?” and “Isn’t facilitation really something doulas try to accomplish in all they do?”

Upon reflection, I agree with Karen that the word “facilitation” in this context is too broad and leaves room for misinterpretation. Accordingly, I propose amending the doula scope of practice as follows:

1. As non-medical care providers, doulas do not perform clinical tasks such as prescribing treatments, monitoring vital signs, administering medication, or pronouncing a death.
2. Medical Aid in Dying (MAiD). When supporting individuals who have chosen MAiD, it is imperative that doulas maintain their non-clinical, non-medicalized role. Doulas may provide guidance, education, and planning for the MAiD process and be present as a witness and guide. Doulas are prohibited under the scope of practice from handling medications that will result in a person’s death.

Download the updated Doula Scope of Practice.

MAiD increases risk for the doula.

The doula scope of practice is intended to protect both the consumer and the doula. I believe that when doulas cross the line to provide clinical or medicalized care (which MAiD clearly is), they increase their liability exposure significantly while at the same time creating confusion for both consumers and care providers about the role of the doula. Consider the risk for the doula when family members may not all support a person’s choice to end their life. (Do you want to be in the middle of that scenario?) And ask yourself why some hospices, in states where MAiD is legal, bar their personnel from being involved or even present in the same location for a medically assisted death.

Summary

I look forward to constructive feedback from the doula community and am open to further amending this statement as the conversation develops. Hopefully, the training organizations and leaders of the EOLD movement can be unified in our understanding of the doula scope of practice. I don’t see how we take on a clinical role and still be true to the doula model of care. One simply cannot be a doula and “specialize” in a medical role. As always, doulas can be resourceful, gather information, support informed decision making, and be present at the death for comfort and guidance. Information, support, resources (aka “facilitation”) are always in the doula’s wheelhouse. Handling medications is a hard “no.” Call yourself something else (please).

A debate regarding the pros and cons of legalizing MAiD, as well as ethical concerns related to the practice, is a completely different (and worthy) conversation. Each doula is encouraged to set her/his own boundaries around the practice based on whether they can provide nonjudgmental support to an individual who is making this choice. No doula is required to facilitate an action that contradicts her/his own deeply held beliefs.

—With thanks to Karen Reppen for her edits, insights, and willingness to engage.

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Just as no one doula can be the right fit for every family, no one doula training can be the best fit for every prospective doula. Before you get lost in the Sea of Choices and are tempted to give up before you start, let’s establish some criteria for your decision-making. In this article, I will provide a framework for spotting key differences among the myriad of offerings.

Is the doula training in person or online? Consider how you learn best before choosing a doula training.

In-person training has become less common since COVID-19 began to affect every aspect of our lives in March 2020. The social aspect of a live workshop is, no doubt, a significant feature and may be important to you. For birth doulas in particular, there is greater opportunity to practice hands-on techniques, which is a benefit. Downsides can include the need to travel, take time off work, be away from home and family, and pay related travel expenses. Workshops are a very concentrated form of learning, often involving 2–4 long days.

Online training can take different forms, as follows

• Self-paced learning. The student gains access to an online learning platform where the course is hosted, and then moves through the study materials at their own pace. This ensures time to digest the content and follow up on linked resources for a deeper dive. Check whether you have unlimited access, in case you want to review materials in the future. Self-paced learning works well for students who are goal-oriented and self-motivated.
• Live online workshops (on Zoom or similar platform). This option involves sitting at your computer in real time. It can be a convenient choice with a surprising overlap of benefits similar to in-person training including sharing, learning, and connecting with others. For example, breakout rooms on Zoom allow for small group exercises and processing sessions. Hands-on skills can be taught as demonstrations with students arranging to have a “practice partner” available at their location for counter-demonstration and Q&A. Some trainers/organizations will offer online workshops over a weekend, while others might offer a weekly course over a longer period.
• Hybrid courses may offer a blend of both self-paced learning and live, interactive meetings or workshops.

Is professional doula certification offered?

Most training organizations offer certification, but there are exceptions, so be sure and check. Many folks considering becoming a doula are confused about the meaning and value of certification. The main factors to consider are:

• Cost. Is the certification included in the training fee or is there a separate fee? If so, how much?
• Requirements. What are the requirements to become certified? If you are required to get hands-on experience serving families, how do you find the families? How long does the process typically take to complete? Can you even get into your local hospitals as an uncertified doula in order to gain the hands-on experience to become certified, if required (my not-so-favorite Catch-22 since COVID)?
• Is re-certification required? If so, what is involved (requirements, fees)? Many organizations require an annual membership fee for certified doulas, continuing education, and so on.

What are the qualifications of the trainer?

The background and expertise of the trainer you are considering are important. How broad is their knowledge? How deep their experience? What strengths do they claim? What is their reputation? What do others say about them (e.g., testimonials on their website)?

For end-of-life doulas, I have noticed that many training programs have not been developed by experienced doulas, steeped in the doula world and the doula model of care. Rather, they have been created by hospice professionals who are often coming from a clinical perspective and then adapting the training to the doula model. Can a trainer who has never had a doula business authentically teach you to create a doula business?

What is the cost of the training?

Most doula trainings are in the same ballpark in terms of cost, but there are a few outliers. Consider whether the organizations on the higher end are truly offering more value or do they just appear to be savvy marketers? A handful of trainers may offer a significant degree of hand holding post-training, mentoring, or even internships, though this is not the norm. A strict cost comparison, searching for the cheapest doula training available, will likely not serve you well. Plus, there can be hidden costs to doula training, as mentioned above under certification. Make note of the fees, whether payment plans are available, and what you get for your money. Some trainers may offer scholarships or reduced fees for low-income trainees, especially nonprofits who can offset these losses with grant funding.

Does the trainer/organization have a niche/specialty?

We all have our strengths. Most trainers will highlight their strengths and areas of interest or expertise. They may focus on an aspect of doula work they are passionate about or a particular skill set. If their niche resonates with you, then perhaps you have found your match. Does the website you are browsing have some personality? Does it jive with you, your interests, motivations around engaging doula work, and goals for training?

Does the trainer/organization promote a political agenda?

In today’s highly polarized political climate, I have noticed that many doula trainers and organizations are promoting a political agenda. Are their values, as reflected in topics covered and language used on their website aligned with yours? Are you a good fit for their brand? If you are not in alignment, consider whether you want to engage on these topics in doula training, for example, Critical Race Theory. Prospective birth doulas may want to consider your comfort level with the elimination of the words “mother” or “woman” when speaking about birth, in favor of terms such as “person in labor” or “pregnant person.” On the flip side, if your trainer is using gendered language, will that put you off? An organization’s website will provide clues regarding what you can expect.

How is their customer service?

Are your emails promptly acknowledged? Your phone calls returned? Do you have the sense that this person/organization cares about your experience and will endeavor to ensure you are a satisfied customer? If they take days to respond to your questions up front, consider what happens once you have paid XX dollars and experience technical glitches or other issues down the road?

In Summary: What does your gut say?

In this article, we have discussed how to choose a doula training and have given you different parameters on which to base your selection. Start with considering your goals for doula work. As you are searching, makes a few notes about each of the websites, based on these parameters. You may think you will remember, but without some structure to your search, I guarantee your session will end in a cross-eyed blur! Once you have vetted the top contenders, narrow down your choice to the top two or three. You are seeking the right match for your goals, learning style, personality, and pocketbook. In the end, choose the doula training that is right for you—go with your gut!

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