On the Death by Design Podcast

Last year I received a call from Kimberly Paul, author of “Bridging the Gap“, creator of “Begin the Conversation,” and producer of the wonderful podcast “Death by Design.”

From that conversation came an instant kinship, an invitation to appear on her podcast, and some pretty amazing ideas.

For me this was a chance to talk about what drive me, the dichotomy between the medical work and the end of life doula world and how to resolve it, as well as discuss my reasons for wanting to work directly with people and not through an online platform and my commitment to building a compassionate, trained, non-medical community support system for the dying and their loved ones.

Anyways, I hope you’ll listen. I really enjoyed having our conversation. Here’s the link to the episode

Kim is currently traveling the country in an RV promoting “Bridging the Gap” and tell her OWN (amazing) story. If you get a chance to meet her, invite her to your community…. do it!

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Acronym Soup for the EOLDoula Movement’s Soul

Like many I recently got a little confused and overwhelmed by all the new end of life doula initiatives that are happening. So, I turned to my mentor Lee Webster founder of New Hampshire Funeral Resources, Education, and Advocacy, to help me sort it all out. Here’s what she had to say:

“Having trouble following the bouncing acronyms in the EOLD world these days? You’re not alone! Here’s a quick guide to help define three different initiatives that have been developing at the same time that has all of our heads spinning! Follow the links to more information.

NEDA
The National End-of-Life Doula Alliance (NEDA) is a 501c6 Nonprofit Business League for EOLDs. Go to the NEDA Home and About pages, which explain clearly what NEDA is and how it is positioning itself to support EOLDs. As a Membership Organization and Business League, we will put on conferences and retreats and networking get togethers called Doulapaloozas to help doulas meet each other and strengthen ties and share information. We will have directories for you to find each other and to be accessed by the public where you can tout your training and credentials. Plus we’ll send out a monthly newsletter and all the benefits listed on the Membership page. We are also gathering intel from various practitioners and academic, business, and professional fields to develop core competencies that EOLDs may voluntarily choose to be educated in if they wish for greater recognition. NEDA honors and encourages EOLDs of all education and experience. We are in the middle of getting all of our systems up and operational to begin taking membership applications and building our directories and mailing list, so please be patient for this to come online soon. http://www.nedalliance.org/

NHPCO
The National Hospice & Palliative Care Organization (NHPCO) has Committees and Councils that contribute to important aspects of their work. They formed a new one recently for EOLDs after Deanna Cochran initiated a proposal to explore how EOLDS and hospices might interface. Some NEDA members are currently on the founding council getting things rolling, but there are others outside of NEDA on the council already. In September, membership will open up so more people can join the council as part of the NHPCO’s internal annual process. This council is run by NHPCO, not NEDA. Learn more about it and how you can participate at http://www.nedalliance.org/nhpco-eold-council.html

NPEC
National Professional End-of-Life Doula Certification program (NPEC), run by Professional Doula International (PDI)
NPEC is a completely separate training program run by Deanna Cochran (Quality of Life Care), Patty Burgess (Teaching Transitions and Doing Death Differently), and Suzanne O’Brien (DoulaGivers International). It is a collaborative venture between the three of them to teach the most comprehensive EOLD program they can by joining forces. They will be offering an in-house certification just as most EOLD trainers do that attests to the fact that you successfully completed their course. As part of their offerings, they will be teaching to the core competencies developed by NEDA and the National Home Funeral Alliance (NHFA) that prepare EOLDs and Home Funeral Guides to earn a respective Certificate of Proficiency, which may then position EOLDs to work with hospice in the future should that become available. NPEC has invited other teachers from related fields, some but not all of whom serve on NEDA’s board, to provide additional training as part of their expanded curriculum, but this is not a NEDA initiative. http://www.professionaldoulainternational.com/squeeze-page19558798

Not mentioned by Lee is ELPC the  End of Life Practitioners Collective this is the first nationwide service to match EOL care providers with people seeking their specific skills, and brain child and labor of love of Deanna Cochran (whose name you just read a lot). For just $10/year you can create a detailed listing and have access to a vast support network of like-minded people.

What a great time to be an EOL Doula!

Doula: Old and New

I recently had the privilege of being interviewed about my work as an end of life doula. In our discussion I thought about the origin of the word “doula” and the way in which caring for someone at death is both similar and different today than it was even just a few decades ago.

As someone that uses the title “doula” I think it’s important to remember that in the original Greek “doula” meant “female slave.” Many people use the word servant, but although slavery in Ancient Greece was markedly different from chattel slavery, it still denotes a woman who was brought into a family to serve a role. It is most likely she could not choose which family she worked for, nor when her time of service with a particular family was over. Or, even perhaps, when her time of service itself was over.

So that’s an important difference and one that should not be forgotten: the modern doula chooses their work, their clients, their terms of service, and time of service.

At some point in time the family caregiver subsumed the role of doula. While there may have midwives who assisted birthing women and their female relatives, or people who dressed the dead, tending to the dying was the responsibility of the family.

The service we choose to provide as modern doulas- personal, emotional, spiritual, and practical support to someone who is dying and their loved ones would probably baffle family caregivers even just two generations ago.

While it was common for a family to care for their dying loved ones, the concepts of personal dignity, autonomy, and spirituality were not. Practical care was centered on tending to physical discomfort. Any spiritual needs in the hands of trained spiritual advisors (or dictated in the Ars moriendi). Personal and emotional support varied from family to family.

Today we recognize, almost to a fault (but that’s for another post), the value of independence and the very personal definition of suffering that goes beyond physical discomfort. It’s not that physical discomfort is not important or that trained spiritual advisors don’t have a place, it’s that both of those things are part of a larger whole when it comes to tending someone who is dying.

It’s become quite common for women to have a birth plan, but for all the talk of advance care planning it’s still rare for someone to have a death plan. And yet, we recognize a person’s right to make their own decisions about their dying, create meaningful rituals for dying and after death, and define dignity and suffering for themselves.

And that’s why I feel as though it is much easier to be of service as an end of life doula to someone who has done work to come into relationship with their own mortality and thought about how they as an individual need to be supported through their unique dying process.

I guess that means as a modern doula I am also hoping for modern patients.

 

Article in Vermont’s Seven Days discussing End of Life Doulas and UVM’s End Of Doula online training program

Learn more at learn.uvm.edu/program/end-of-life-doula-certificate.

The original print version of this article was headlined “Good Endings”

Source: UVM Pilots an End-of-Life Doula Program

Featured in The New York Times!!!

A year ago I was interviewed by Sonya Vatomsky for an article they were working on about green burial. Today, that piece came out in The New York Times and my thoughts about green burial (including the negative impact of cremains and the need for more green burial spaces) are featured along with information from The Green Burial Council, Amber Carvaly of UndertakingLA, and ElementalNW 

It’s an honor to featured in such an important space talking about one of my true passions. At the time of the interview the non-profit I founded, Green Burial Vermont was still just a thought, but the idea of making green burial accessible to all remains part of its core mission.

D is for Death: Stepping into my role as an End of Life Educator

(Image credit)

In my role as an End of Life Specialist there are two things that fill my soul: serving as an EOL Doula and being an EOL educator. The first I planned on, the second is contrary to everything I thought I knew about myself.

One thing had always been clear to me- I did not want to be a teacher. Yet since I’ve begun my journey into end of life people I have found myself in situations where people have come to me to learn. To learn how to come into relationship with their mortality, to learn how to provide a home funeral, to learn how to be an EOL doula, to learn about green burial…

And I love it.

So I made it my goal this year to step up as an End of Life Educator. What follows is a list of all the projects I’ve taken on so far.

I’m working with the Montpelier Senior Activity Center which is doing a year-long series on End of Life Issues. I kicked off  2018 there with a screening of Being Mortal and a discussion of how to learn about our own values for dying well and what makes communicating about death and dying so hard.
On March 13th I’ll give a workshop there on how to be an effective Health Care Agent and later this spring I’ll give another on how End of Life Doulas can improve End of Life.
I’m also teaching a 10-week course there called “Dying in Community” with the goal that participants to move towards feeling more comfortable and confident not only talking about death, but taking action to create good death plans for themselves, and to step forward as caregivers in community.

This course at MSAC is one I hope to use as template for two college course proposals I hope to develop and submit… more on those to come!

Last year I had the honor of being asked to develop a module for the UVM Online End of Life Doula Certificate Program.  And I’ve just wrapped up two more modules for the course as it enters its second cycle and will be recording a Q&A later this month. It is such a privilege to be able to contribute to this dynamic and developing program.

I came into my own teaching when I decided to tour the state and educate people about the burial depth bill that would finally make green burial fully viable in Vermont. Now that there is a non-profit, Green Burial Vermont, founded together with people who were a part of that tour with me, we are working to design green burial workshops for communities and cemeterians in order to promote the development of green burial spaces that are both “best for the land and best for the people.” Vermont may be far from the first state to have green burial spaces, but we hope to soon be among the best states offering green burial.

I also have my own Ending Well Training program. After studying with some of the greatest teachers in End of Life I have designed a unique course that is self-directed yet hands-on: students learn at their own pace through reading, writing, and hands-on activities and are supported with one-on-one meetings with me throughout. I haven’t written much about it yet, but it is extremely rewarding- email me if you want to learn more!

Finally, I have two secret projects with two different doulas that I can’t wait to share more about.

I truly believe that to have our own good deaths we need to normalize talking about death. As I wrote about in my last blog post, often we end up “preaching to the choir” in those conversations. It is my hope that through offering a variety of educational opportunities in a variety of settings I’ll be able to reach people who not otherwise be willing to engage in talking about death and dying.

Does Talking About Death Lead To Better Dying?

(Image from: Social Innovation Camp)

Recently, an article from The Overtake called “The Death Trap” has been making the rounds and response has been varied. I know that it’s one that I can’t get out of my head. Mostly because of this line: “The question now is whether the emergence of mortality as a popular theme is having any practical effect: do we really know more about death and is that changing how we die?”

In other words, does talking about dying well actually lead to people dying well (whatever that means for them)?

I believe dying well requires people to understand they are going to die (and if you’re reading this, you are someone who will die), to think about what dying well means to them personally, to understand the complexities required to navigate dying well and the general messiness of death, have a community to support them, and to be able to communicate clearly about their wishes to their loved ones, doctors, and community.

Like most people who work with people either at or thinking about the end of life, the idea that talking about dying well doesn’t translate to at least a better death seems inimical. But, it’s an important question to ask. Within my “death positive” community people talk about death all the time, and work to ensure other people have “their own good deaths.” We’re not going to be objective about the subject.

Profession-related subjectivity is never more clear than when the article compares the beliefs of Hannah Merriman, a death doula, and those of Angela Halley, a palliative care doctor (both practice in the UK).

Merriman believes that the time has come for death “to come in out from the cold,” and stop being “a huge dark scary corner of the house, it’s not the attic we never go into.” The article says she is optimistic that our current trends towards openly talking about death and dying are changing the way people approach dying.

But, in Dr. Halley’s experience with the exception of “some sectors of society who are very mobilised and thoughtful about death and dying…the vast majority probably still don’t really want to discuss it unless they have to…when I bring it up in a social situations, people kind of move away and feel uncomfortable.”

So. There are small groups of people who are comfortable, or are at least willing, to accept the fact that everybody dies. But who do they talk to? Other people comfortable, or at least willing, to accept their own mortality. Unfortunately, that’s rarely their loved ones and care providers.

For example, movements like Death Cafe are fantastic. I’ve been co-facilitating the Death Cafe in my community for 4 years. BUT, many of our regulars still say the reason they come every month is because they don’t have anyone else to talk about death and dying with. This means they aren’t talking to their families, their loved ones, and certainly not their physicians- any of the people who could support them in dying well.

And, until those conversations start happening, there is no reason for our medical system to change and support people in having those conversations, let alone make the systemic changes necessary to support their wishes.

When I brought this article up on Twitter I wrote: “For me, the challenge implied is how to broaden the conversation and make people feel more empowered when talking with doctors.” I’ve worked in a major hospital and I’ve seen how even the most literate of patients and caretakers can get swallowed by a system that is designed to push one last treatment, this new drug, one more surgery- anything to forestall the “failure” of death. Patient empowerment is a part of what I offer in my community outreach work and incorporate into my work with patients and their families because it is hard to be heard.

Within medical circles, as Dr. Sarah Russell pointed out, it’s common for there to be courses for practitioners that focus on difficult conversations. Last year Dr. Danielle Ofri wrote the amazing book “What Patients Say, What Doctors Hear,” and in 2015, Dr. Angelo Volandes wrote “The Conversation” while Dr. Atul Gawande started a movement around “Being Mortal.” Dr. Jessica Zitter produced “Extremis”– a short documentary that shows the dangers of not knowing your own wishes. Conferences like the End Well Symposium (nice name!) are designed specifically so that professionals can come together and improve the experience of death and dying. Meanwhile non-medical practitioners like myself, my mentors, and my peers, work in the community- doing our best to educate people not only about their options, but how to advocate for them.

So, what’s the problem? The problem is none of us are having these conversations TOGETHER. Both the palliative care doctor and hospice director in my town are phenomenal women who make time to speak at community events about the importance of patient literacy and autonomy. Have we ever done a patient empowerment event together? Nope. (But stay tuned!)

So, does talking about death lead to better dying? Absolutely. But, to make sure you get the death you want you must be talking to everyone, not just the people who want to listen. It’s ok to make someone uncomfortable by talking about your wishes for dying well, it’s important to create space in family conversation for mortality, living well means talking to your doctor about dying well.

And for those of us who want to listen? Well, we need to make sure we’re not just listening, but talking to each other too.