Medical Aid in Dying, End-of-Life Doulas, and the Doula Scope of Practice

End-of-Life Doula Scope of Practice

By Patty Brennan

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.
  3. Doulas cannot take payment for hands-on care of the body of the deceased.

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.
  3. Doulas must abide by variable state laws relevant to services they provide (e.g., laws concerning the practice of MAiD or acceptance of payment for hands-on care of the deceased, use of the term “funeral planning,” etc.).

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.

7 Comments

  1. Shawna Barlette on May 16, 2024 at 3:31 pm

    As an EOLD with my own practice, what you have written here summarizes my feelings as well.

    “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.”

  2. Michelle Morin on May 17, 2024 at 7:09 am

    As an EOL doula with my own practice, I am happy to support clients who choose Maid, and am an advocate for it even though it is not legal yet in my state. I feel my clients should be able to choose this when faced with a terminal illness as I’ve seen how hard it is on them and their families thru the months and weeks leading up to their death. However, I am not a licensed medical provider and would not feel comfortable at any point administering meds to do this. I’m happy to be present, as a support person, but I feel it should stay in the hands of doctors to administer.

    • Patty Brennan on May 17, 2024 at 8:35 am

      Michelle, in all states where MAiD is legal the person must SELF-ADMINISTER the medication via the gastro-intestinal system by law. No other person–doula or anyone else–can legally do this.

      • Janie Rakow on May 18, 2024 at 11:38 am

        Patty – this is incorrect information. Self-administer in every state means they drink the meds themselves or push the plunger on the syringe which has been inserted via PEG tube or rectal catheter. The doula never inserts the rectal catheter (a nurse or physician does). Anyone can legally mix the meds – a loved one, a doula, a volunteer, anyone. And, anyone can hold the glass to the person’s lips, and as long as the patient/client drinks the meds themselves; that is considered self-administration.

  3. Patty Brennan on May 18, 2024 at 4:18 pm

    Thanks for your input, Janie. I think the legal mandate to self-administer the meds is clear in what I wrote. I was not under the impression that the doula would place a rectal catheter, though certainly it would be a medical/clinical practice to do so. Perhaps the statement “doulas are further instructed to be prepared to help sedate the patient by administering phenobarbital via rectal suppository” would be better stated as “doulas are further instructed that additional sedation may be required. This involves administration of phenobarbital via rectal suppository.”

    My question for you: Who places the rectal suppository when an EOLD is a part of the care team (or taking the lead)? Your comment implies that it is a nurse or doctor but these clinical care providers may not be available or present for MAiD. Presumably, if things are going “wrong,” it would be somewhat urgent to take appropriate action. And, if the hospice does not allow the nurse to be present at a MAiD, then who places the rectal suppository?

    I fully understand that the doula’s actions shown in your training video are not illegal. But by solely focusing on what is legal for someone to do rather misses the point about the doula scope of practice.

  4. Joy Rodriguez on May 18, 2024 at 6:27 pm

    As a doula practicing in a MAiD legal state, I feel very strongly that mixing medications that are legally prescribed is well within my scope as a non-medical practitioner. I provide support to my clients all through the MAiD process. I provide assistance in navigation, hold space with them in their anticipatory grief, educate about the day of death to client and their extended web of
    Loved ones, attend the day of death, and provide bereavement support for their loved ones after transition.

    One of the most vital roles I play as a doula is in mixing the medication and bringing it to the client’s lips. This alleviates that burden from the loved ones and allows them to be more fully present with the client who is passing. It also removes some of the triggers of complicated grief because the caregiver does not have to feel that they have taken an active role in hastening the death. If the doctor is present at the bedside, it can remove some of the autonomy that the law was meant to provide. The power dynamic could and sometimes does shift from patient driven to physician driven. By having a doula, volunteer, or hospice nurse do the mixing, these two major complications are avoided.

    It is within my scope of practice to provide non-medical support to my clients and their loved ones. I feel strongly that I do this by mixing the death hastening medication rather than placing that burden on family members.

  5. Patty Brennan on May 18, 2024 at 6:44 pm

    I understand your position, Joy, but I disagree. I don’t believe it is our job as doulas to relieve clients of the burden of responsibility associated with their choices. They ARE responsible for their choices. Why should the doula assume this responsibility on their behalf? It substantially increases our liability. We cannot rescue people from the reality and consequences of their choices. If our job is to empower families and support them in their choices, then let them take the lead.

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Patty Brennan

Patty is the owner and visionary force behind Lifespan Doulas. For 40+ years, she has been a doula, midwife, educator, author, nonprofit executive, and entrepreneur. Patty has personally trained over 3,000 people to become doulas. She is the author of The Doula Business Guide: How to Succeed as a Birth, Postpartum or End-of-Life Doula, 4th Edition, and accompanying Workbook.