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.

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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.

Being Ending Well: Featured in Natural Transition Magazine Volume 6 Issue 2

This issue of NTM looks at the new deathcare professionals; the doulas, the midwives, the natural funeral directors including Amber Carvaly of Undertaking LA and Elizabeth Fournier, the “green reaper.” We also feature the eco art of Jill Powers who created an art collaboration at the end of life. We bring you natural death pioneer, Cari Leversee’s Dying Out Loud on Facebook, and much more.

A version of the following essay opens the latest issue of Natural Transitions Magazine

Being Ending Well: How I make a living as a “New Deathcare Professional”

This is my favorite part!” My husband steps back after introducing me and I am asked the inevitable “and what do you do?” question.

Over the past 5 years I’ve learned to be careful answering questions about what I do. And, of course, be hyper-aware of who is asking it. If it is someone else from the #deathpositive community I have an ever-evolving elevator pitch, but that’s rare. Usually, I start out by explaining I work in end of life- holding eye-contact and looking for that first glimpse of fear glazing over. I proceed slowly with strangers aware that what I do can trigger all sorts of emotions, brand me as morbid, and only sometimes, elicit genuine interest.

Technically, my title is “End of Life Specialist.” But, if we’re getting technical, I made that title up. I am: an advance care planner, an end of life doula, a home funeral guide, a green burial advocate and founder of the non-profit Green Burial Vermont, a pregnancy loss doula, a community death educator, a hospice volunteer, a death cafe facilitator, a patient empowerment coach, a memoir writing teacher, and a mentor/teacher to those seeking to find their place in the end of life field. End of Life Specialist has a much better ring to it. I do this all through my LLC, Ending Well which I founded in April of 2016 but started working towards in 2013.

No one just wakes up and decides “Hey, I want to be a death midwife.” said Patty Burgess-Brecht as she interviewed me.

Technically, this is true. When I decided, I was sitting at my best friend’s table in the late afternoon talking about my experiences with death and dying and life-limiting decisions at a major hospital and how I wished there was something different. My friend, a birth doula/midwife-in-training said “You should be a death midwife.” She explained to me what she knew of the profession and I was hooked. I went home and googled (no wikipedia entry came up) instead I found websites for some of the matriarchs of this movement- Donna Belk, Jerrigrace Lyons- and books, lots and lots of books. I dug in and started learning. I took any training I could afford, read almost all the books I found, and sought mentors from anyone willing to reply to my emails.

You can’t just hang out your shingle and expect to make a living.” Lee Webster said, driving me home from a home funeral intensive.

In 2014 my husband and I moved to Montpelier, Vermont. In the year since that conversation at my friend’s table I had left my old path behind and was fully committed to being a death midwife. I needed to learn what it was really like to work with the dying and immediately signed up to for the hospice volunteer training that was about to start. Already I had learned that I didn’t want to just support people through dying, I wanted them to learn about the healing power of home funerals and I wanted to introduce them to the concept of green burials. As I began working with hospice patients it became clear to me that I could never have the relationship I was hoping for if people hadn’t thought about their own deaths. I had been participating in the Montpelier Death Cafe since January and I could see the difference between people who could openly engage with their thoughts and death and dying and those that were in denial. “It’s like when you used to go to AAA before a trip,” on Death Cafe participant said recently. “You get the map, the tips on where to stay, everything you need to know to make your trip successful. Death Cafe and talking about death is the way I prepare for this trip I know I’ll have to take someday. Who wouldn’t want to be prepared as possible for death?”

But how to get people to talk about death? Campaigns like the Conversation Project and Death Cafe were in full swing, the option was there. I trained with Respecting Choices and learned how to talk to people who wanted to talk about death, but not how to get them to open up. And I began to recognize how my own background- working in hospitals, a Master’s Degree in Neuroscience, two parents with medical science backgrounds who had included me as they cared for their own parents- gave me an enormous privilege when it came to being comfortable talking to medical professionals and advocating for myself and my wants that most people don’t have and our culture doesn’t encourage. I started mining my background for tools that would make people I talked with feel empowered. A friend had a miscarriage and I learned that 1 in 4 pregnancies ends in fetal death and I started training as a pregnancy loss doula, because how can you say goodbye when you haven’t had a chance to say hello?

During this time I had proposed community workshops to anchor a local death awareness campaign to the communities it visited. These workshops were successful and well-attended. I finally had an answer for how to get people to talk about death- invite them into a space where that was the purpose. First, I decided to create a big space with a community conference of my own to launch my business, which I did in August of 2016. From that big space I could start to form relationships, small spaces, where I could help people “plan, prepare, and experience your own good death.” I haven’t looked back since.

I want you to teach me how to come into relationship with my own mortality.” -client

The woman who said that was one of the first to seek me out. And, with that question, the first to help me realize that that was my goal in working with people. Although we often choose to ignore it, we live with death every day. Death, or rather, the fact that we will die, is a part of who we are.

I finished college a semester early. During the spring of my senior year I prepared to enter grad school back at home with my parents. One morning the house phone rang, I barely recognized my distraught friend’s voice but I knew enough to sit when she asked if I was sitting down. The day before our good friend had left campus to go home for the weekend. Her car spun out and into the path of a 52’ tractor trailer. She had been declared dead at the scene. Three weeks later, just after coming back from campus for her memorial, a friend working at my college asked if I knew any dance majors, because there had been a horrific accident in the dance studio. My heart sank. One of my good friends had died when she fell from the studio during a dance rehearsal. A few months later graduation was surreal- admist the messages of how we were now ready to do anything a voice in my head reminded me that one of those things might be to die.

The miracle is that we get to live!”- client

I’ve never understood why dying was considered a taboo subject. I took my first steps at my great-grandmother’s funeral when I was 9 months old. When I was 7, and my great-grandfather died I watched my father cry for the first time as I asked him what that meant and later, held his hand tightly as I placed a white rose in my great-grandfather’s casket. A woman I worked with this summer echoed my feelings as we spoke about her experience with death- her husband had died in her arms. It was beautiful, she told me. And though she was devastated at the time it taught her that life was a gift, a miracle.

As a hospice volunteer I have found a special niche working with people who are in nursing homes. Many of the patients I have been with as a hospice volunteer have had cognitive issues, such as dementia, even more have had difficult relationships with their families. I find, in our conversations, that they are often processing their lives as best they can. I don’t think it mattered that they were dying as much as it mattered that they were able to tell their story of who they were. The first summer I worked as a volunteer I worked with a woman who was no longer able to hear and had outlived all of her family. I had to write out anything I wanted to say to her. Luckily, she had plenty she wanted to say to me and I rarely had to write anything at all. She described in great detail what Montpelier had been like 90 years ago. The librarian let me check out archival material that included photos from the time this woman had been a child. She used those photos to construct her Montpelier for me. And although it’s been nearly 4 years I still walk through downtown thinking, oh, this is the way she walked to school, this is where her house would’ve been.

Joan Didion says, “we tell ourselves stories in order to live.” People who are dying give us the shape of their lives in the stories they tell, but those stories also shape us. Just as I will never look at Montpelier the same way again, I will never watch another war movie without seeing the faces of veterans I have sat with, I will never drive by an old farm without thinking of women who made homes out of them. I will never pass up the chance to hear someone’s story as it is true for them and hope I can always appreciate they ways in which they change me.

Will you call Michelle?”- Hospice RN

While the #deathpositive movement focuses on the idea of a “good death,” I’ve been cautious about defining that (you may have noticed my mission statement for Ending Well is “your own good death”) ever since one of the first Death Cafes I attended. Another attendee told a beautiful story of someone who died “kicking and screaming.” We can come into relationship with our mortality, but that doesn’t mean we become accepting or passive about dying. Even the stereotypical “good death” involves actively engaging with dying. Regardless, most people do not want to die alone and along with the rise of the narrative of the “good death” has come to resurgence of “the vigil”

Although even as I type those words I am aware that resurgence isn’t at all accurate. I recently realized that I learned “to vigil” not as a end of life doula or a hospice volunteer, but from my mother when her own mother was dying. Their relationship had never been easy- my grandmother could be quite cruel, we were not close. But my mother was always there for her mother. As my grandmother’s body was devastated by a recurring infection she told my mother she had had enough. She saw her husband, my grandfather, who had been for nearly 10 years, and she wanted to go with him. Without the help of a hospice agency my mother went to be with her mother, and I went with her. As Christmas approached we sat with grandmother in the nursing home. When my grandmother could no longer talk, my mother just held her hand and I sat beside her. As my grandmother’s breathing slowed, I saw tears in my mother’s eyes. The room was silent and full of love. When my grandmother never inhaled again, I slipped quietly from the room to let my mother say goodbye. Instinctually, I knew not to go to the nurses station first and trigger the activity that would follow. Instead I called my Dad and asked him to come. He was the one that spoke with nurse. The three of us sat with my grandmother’s body until my mother was ready to go. It was this experience that modeled for me what it means to simple be present with someone, for someone.

I sometimes will get a call from my hospice agency when someone is lingering in a facility. I don’t think I’ve ever sat with such a person more than twice in those situations. They are never people I have met before, I rarely get much personal information- other than the basics passed along from my volunteer coordinator and what I can gather from the objects in the room. But I never make assumptions. I feel like that final stage of dying is a great inward journey and I don’t know what these strangers are feeling. I try as best I can to simply surround them with love. Sometimes silence feels best, sometimes I’ll say out-loud: “Everyone you have ever loved, knows that you love them. Their love is with you now. When you are ready, that love will stay with you, whatever comes next.” I recreate in those rooms the love I felt in my grandmother’s room. And I hope it brings ease to those final hours.

Our graves are our final stories.”- green burial admirer

Not long after I launched my business I was contacted by a cemetery commission member the town over. Vermont had some statutes in place that made green burial difficult and while most of them had been changed in 2015, there was one left in place. People were asking about green burial in her town and she wanted to know what to say. After an amazing community meaning speaking about the importance of green burial we got the opportunity to change the final statute interfering with green burial and it is now a fully viable option for Vermonters.

When seeking popular support to change the burial law I traveled around the state providing free library talks about green burial. Over one hundred people came out in 8 towns. Many knew nothing about green burial, many never realized that having a green burial wasn’t easy in Vermont. The discussions at these events were lively and informative. I had come to learn about green burial while training to be a home funeral guide- to me there is a link between the two ideas, both are final acts of love that honor the person who has died. Vermont was the first state to recognize in statutory law that families have the right to care for their own dead, and yet it is one of the last states to make it possible for people to be buried in accordance with their ethics and values- for their graves to be a part of the larger story of life instead of just birth dates and death dates on a headstone.

I often tell a story when speaking about green burial. It has to do with my father’s mother’s funeral. She was the last of my grandparents to die and, like all my grandparents, she had a conventional funeral- she was embalmed, had a viewing, a church service, and a cemetery service. But, at the cemetery they did not lower the casket. We walked away from her grave with her casket sitting on top of the lowering device. I don’t think I was the only one in my family who struggled with the feeling of leaving her exposed in the cold January air. I certainly felt no sense of closure from the experience. To me it speaks to everything in our conventional funeral traditions that alienate us from our dead and make us passive participants in after death rituals.

In my end is my beginning” – T.S. Eliot

Building my business over this past year has made me realize that the biggest obstacle I face is the same one I wrestled with when I set out to have a career as an end of life specialist: our unwillingness to engage with our own mortality. We, as a society, are afraid of death, of dying, and of the dead. I don’t think we need to overcome that fear, but I do think we need to overcome the barrier to talking about these things that that fear creates. In my work, I ask people to work with that fear. I create a space for them to be themselves, fear and all, and ask them to make plans for their own dying, their own funerals. I am present with them in their dying. I help them design personal, active, memorial rituals for their parents, siblings, friends, children, and babies they will never meet. It is the greatest privilege to do so and it has taught me more about life than I ever knew I didn’t know.

When once I would have served as the town witch- caring for the dying and laying out the dead, now I find myself at the crossroads of a major transition- one that involves everything from medical care to popular culture. The space that I have created for people in my community is being being sought out by people who have read Being Mortal, or seen a loved one die, heard Beyoncé talk about miscarriage, or are curious about the Viking-esque funeral they saw on “Game of Thrones.” Slowly the barriers that fear put up between death, life, and talking about it seem to be eroding.

When I tell strangers what I do for a living I am always seeking for a way to create a small space for them to become aware of their fear, at least enough to engage with me about what I do for a living and why. Even if it is just for however long it takes for them to make an excuse and move onto someone else to talk to, people who meet me are reminded that people die, that they will die. Changing the conversation, even for a few minutes is just another way of creating a doorway for death to be a part of talking about life. So I keep talking, even if sometimes it makes me awkward at parties. Technically, doorways are just holes in walls after all.  -Michelle Acciavatti

Green Burial Vermont comes online, and the story of Jack

This is a story I want to write more about- how a man with terminal cancer came to me with the hopes I could find a cemetery willing to give him a green burial, now that the new laws were in place. How we failed is all here in this Burlington Free Press story

But there are some details missing. Such a cemetery that was willing, but not at a cost Jack could afford. About how the only way to bring the cost down was to put all the burden of funeral planning- from body preparation, to transportation, to grave opening and closing- back onto Jack and his family. And how asking a terminally ill man to expend that kind of energy is unfair. I am a huge advocate for caring for your own dead, but only if it’s a ritual that calls to you.

Jack, and his courage to contact the press to tell his story, will undoubtedly push the creation of green burial grounds along here in Vermont. But in being a pioneer, he is likely to have to be satisfied with knowing he sped the process up for those who follow. His chances of having a green burial are slim.

With Jack’s story going to press my co-founders and I decided we could no longer wait to get Green Burial Vermont up online. Thanks to hard work from my colleagues we’re live and running and a Facebook, Twitter, and Blog will soon follow. Green Burial Vermont has tasked itself with being a resource for cemeteries, communities, and individuals interested in the creation of environmentally and socially responsible burial practices in Vermont.

We hope that Jack’s legacy is one that means green burial is an option accessible to all Vermonters.

Green burial: what it is, and why it faces challenges in Vermont

Here is a 10 minute piece about green burial in Vermont I had the good fortune to be featured in. I hope you find it informative. I had a lot of fun being “outstanding in my field” : Green Burials In Vermont?

Many thanks to Hoss Wuerslin of Greater Northshire Access Television for the opportunity to do an in-depth piece about green burial, why it wasn’t a viable option until June, 2017, and what obstacles need to be overcome before there are green cemeteries in Vermont (mainly that most cemetery by-laws require the use of vaults and their is confusion about the difference between burial at 3.5 versus 5 feet).

Also many, many thanks to the co-founders at Green Burial Vermont- Carl Anderson, Jeri Helen Belisle, Jim Holman, Kerstin Lipke, Diane Raza, Ron Slabaugh, and Jennifer Whitman. Without you guys, there would be no Green Burial Vermont!

(If there is a transcript available I’ll post it here in an update. For now, if you want to read more about the unique path of green burials in Vermont you can check out this post: Three and a Half Feet Under: Cemeteries Are Wary of Green Burials By Terri Hallenbeck @terrivt )

Liminal Spaces: Reflections on Birth and Death

(Image: https://mikkolagerstedt.deviantart.com/art/Dawn-386046325)

I write this sitting in my living room in front of my wood-stove on a day with a windchill so low it threatens to break records. If I glance up I can see my dog curled against the drafty front door- one side exposed to the warm room, the other to the outside chill. In a few moment he will turn, changing one side for its opposite on the other.

It’s a remarkable illustration of the change that defined that last three weeks of 2017 for me, which were spent both in joyous anticipation (and later celebration) of my second greatnephew’s arrival and in intense crisis management with a family whose loved one had suddenly and dramatically turned towards what would become active dying.

I often tell people that I don’t believe that life and death are two sides of the same coin. Rather, together, they are the coin. And yet, this year, I saw just how differently that coin feels when life arrives compared to when it leaves.

This summer I had the privilege of being present for my first, complication-free, live birth. What struck me (beyond the absolute beauty of it), was the pause, just after the final push and just before the first breath. The air vibrated with love and anticipation, rewarded immediately with a deep inhale that broke the stillness.

In that pause I was reminded of the pause that occurs just after the dying have exhaled their final breath and just before the surrounding people become aware that it was final. The air vibrates then too, with many emotions, but the stillness will not be broken. No matter how much the people in the room move, the stillness of death is terrible in its finiteness.

After that first inhale, the midwives and the mother were busy welcoming the baby, checking health and wellness, bonding. Nothing felt rushed or hurried, and all felt imbued with the sense of contentment.

After the final exhale… well… One death I was present for this year was met with quiet resignation. Although surrounded by family and caressed by his wife of nearly 80 years as he died, when his death was confirmed she pulled her hands away. The room was filled with uncomfortable quiet until finally someone began a prayer. They seemed to fidget and cough as a way to mask the stillness and silence. No one touched him again before they left to make way for the funeral home.

My niece told me that after her first son was born she was so full of love and wonder that her heart felt bigger than she could hold. It wasn’t until a friend asked, days after his birth, if he had all of his fingers and toes that she even thought to do the cliched counting. She was simply immersed in the wholeness of this new life in the world.

Another death I was present for was sudden. Although he was clearly dying I had been on the verge of telling the family that it seemed likely he would live at least another day when all attention turned to his final breath. Without waiting for confirmation his family gathered around him- holding him in any way they could. The slight chaos formed a vortex around his still and silent body as everyone did what they needed to do to fill the room with love for every part of him- his eyes, his hands, his humor- before they were finally ready to say goodbye to the whole of him.

This December my niece gave birth to a healthy son. While I wasn’t able to be there with them, she kept me posted until she moved into active labor. And, knowing I was waiting, not long after the birth sent me a text with a picture of him telling me when he arrived, his height, and weight, and that he had arrived loud and indignant. She didn’t tell me how many fingers or toes he had, and I didn’t ask. Nor did I zoom in on the picture to count.

When I am present at a death I stay with the body, usually even after the family is ready to move away. Even if the body will not be kept at home for a home funeral I tend to it. I brush hair and close eyelids. I arrange hands, and pillows behind the head. I straighten blankets. I move gently and talk softly while I work. It is my own ritual to say goodbye. In doing so, I try and honor the stillness and silence of death.

When I held my tiny and new greatnephew for the first time I marveled at his smallness, his warmth, his tiny heart so fiercely beating against my chest, his indignant (it may become a character trait) rooting and cry when he was hungry. Even when settled and sleeping he thrummed with life.

To me our work is not in overcoming our fear of death, but in coming into relationship with our own mortality. We begin and we end, and if we are lucky there are a great many years in between the two that are filled with love and wellness. Some end before they arrive in this world, others end long after they are ready to leave it.

The day is cold and the house is warm and my dog turns and turns to find a balance that suits him. I sit and write and think about living in balance with the fact that no matter how long we are alive for we thrum until we are still.

When end of life is difficult

A difficult end of life experience does not mean that the patient is experiencing a “bad death.” Depending on disease progression and patient choice end of life can be difficult. There is also a condition referred to as “terminal agitation/restlessness” which is not uncommon for any patient and is marked by restlessness, agitation, random body movements- from simply picking at the air to actual thrashing. All of these are a normal part of the dying process even though they can be very upsetting to the patient, their family, and the doula.

As a doula in a difficult end of life situation it is very important that you touch base with the patient, family, and hospice care team and make sure that there is not a need to change the care plan based on the symptoms you have observed. It is also important that you check in with yourself and adjust your self-care as needed.

Our work, even in difficult situations, is to be present and honor the patient’s own experience. However, in these difficult situations we do need to factor safety, both our own and our patient’s, into being present.

Safety: A patient’s safety will be dependent on them, but in very general terms it means that their experience does not have the possibility to re-traumatize, or traumatize them, cause them to harm themselves, or cause them to dissociate. Safe also means your own safety, both physical and mental.

Pain: When people are experiencing physical or emotional pain it can change their behavior. As doulas we simply meet them where they are and without judgement. It is also important to acknowledge and learn about the pain so as to honor the role of pain in the dying experience and do as little as possible to exacerbate it. Let the patient take the lead, and never turn away from bearing witness to their pain.

Traumatic visions/Flashbacks:  As a doula is almost never our role to contradict what a patient is experiencing, even if we can not see, hear, or experience it for ourselves. But when the experience is not a pleasant one we, as doulas, must be aware of whether or not our patient is safe. If patient is seeing violent or upsetting visions, validate what the patient is seeing and ask them how they feel- follow the patient’s lead in discussing it. But, if the patient is upset or become fixated on their experience of the image then they are no longer safe. It can help to ask the patient to describe mundane details of the vision, by refocusing the patient’s attention on the details rather than the whole, it may be possible help them feel calmer or more safe.

For someone who has experienced trauma, these experiences may be more pronounced. If the experience causes the patient to revisit that trauma it may actually become necessary to reorient them to the present in order to keep them safe. Using tactile information is often helpful to gently reorient them to the space around them.

Anxiety/Paranoia: Other patients may just simply not feel safe. Our best tool is our ability to be with the patient and honor their experience without judgement or contradiction. We are not seeking to alter the patient’s experience, rather we are trying to ensure they are safe while having the experience.

Terminal Agitation/Restlessness: Terminal agitation/restlessness can occur in the weeks, days, and hours leading up to active dying. It can present in an innocuous way, such as repeatedly reaching towards the air or picking at clothing, or in a more difficult way, such attempting to move when it is not safe for the patient to stand on their own, or thrashing. It is important to note the onset of such behavior, as it is an indicator that the patient is nearing active dying. Do what you can to make the environment the patient is in safe. Never, ever, restrain the patient. It is rarely possible to reorient a patient who is experiencing terminal agitation/restlessness. There are medical interventions that are possible that can help restore the patient to safety, but they should only be used if they are in accordance with how the patient wants medical treatment at the end of life.

Conclusion: If we are honoring the patient as a person and their wishes for end of life care, then these experiences are simply a part of their dying process. As doulas we must honor them as such.

 

Instructor for the UVM End of Doula Certificate program

I can finally let the word out! It was an honor to be able to contribute to this exciting course for End of Life Doulas, the first to be linked to a major medical school! Apply by August 15th to be a part of the first class! Read all about it here: https://learn.uvm.edu/program/end-of-life-doula-certificate/

Developed in association with the UVM Larner College of Medicine, the University of Vermont has partnered with Cabot Creamery to launch a fully online End of Life Doula Professional Certificate that will prepare you to meet the growing demand for end of life support as people live longer and the course of the average dying process continues to become increasingly gradual and anticipated.

Curriculum

The University of Vermont developed the online End of Life Doula Certificate curriculum to provide a comprehensive program covering the essential skills and knowledge to prepare you to embark on your new End of Life Doula role.  In association with the UVM Larner College of Medicine, we created an interactive and supportive online program that will prepare you to provide a holistic approach to your compassionate care work with your clients.

Learning Objectives

  • Understand how to best work in harmony with your client’s chosen care team, heightening a client’s feelings of empowerment and self-efficacy
  • Develop effective communication skills to have meaningful conversations with clients
  • Learn key ethical principles and patient rights
  • Understand common terminal conditions and diseases, pain management practices, the active dying process, and helpful interventions to ease pain and suffering
  • Learn how to practice Universal Safety Precautions while providing hands-on care
  • Understand the role and scope of an End of Life Doula and apply core skills to provide unconditional positive regard and non-judgmental support for your client
  • Recognize and support psychosocial development states and the stages of grief
  • Become familiar with a client’s network of organizations and professionals offering support to increase your ability to provide comfort to your client
  • Gain the skills to provide bereavement support to a client’s family and friends after death
  • Learn about meaningful activities for client visits and creating an environment of calm

Weekly Module Topics

Week 1: Introduction to End of Life Work, Hospice, and Palliative Care; Personal Death Awareness

Week 2: Introduction to the Grief Continuum; Commonalities in EOL Experiences, Dignity Therapy

Week 3: Understanding the Patient Experience; Terminal Illnesses/Diseases; Pain Assessment and Interventions, Active Dying Process; Introduction to Hands-on Care

Week 4: The Role and Scope of the End of Life Doula; Companioning and Serving; Appropriate Professional Boundaries; Holding Space and Honoring Sacred Space

Week 5: The Needs of Clients: Providing Comfort Care; Caregiving Considerations; “Turning Toward”

Week 6: Religious/Cultural Beliefs and Practices; After Death Options, Effective Referral Practices

Week 7: Preparing for Loss: Life Review, Completion Work, Legacy Projects and Grief Support

Week 8: Activities, Techniques, and Tools for Client Visits; Creating an Environment of Calm; Vigil Sitting; Personal EOL Wishes

 

 

Three and a Half Feet Under: Cemeteries Are Wary of Green Burials By Terri Hallenbeck @terrivt

It was an honor to be featured in this piece by Seven Days , Burlington Vermont’s weekly newsletter. Although the burial depth bill I wrote passed unanimously, I’m still hard at work making green burial accessible to ALL Vermonters. Public education is key. Look for a post about the non-profit I’ve founded, Green Burial Vermont, soon.

“Fred Cheyette plans to be buried in a hayfield next to his house in the town of Orange. His body will be wrapped in a simple cotton sheet and placed three and a half feet deep in the earth, with an oak sapling planted atop the grave.

“So my body feeds the tree,” said the 86-year-old retired engineer and psychotherapist, who is peppier and more youthful looking than his years suggest.

Cheyette has arranged what is known as a green, or natural, burial — rejecting the standard procedures of cemetery interments. There will be no embalming, no varnished coffin, no concrete vault, no polished headstone. He wants his body in the dirt and close to the surface.

Despite a state law that took effect this month to make it easier for Vermonters to choose a green burial, Cheyette’s arrangements are possible only because he will be buried on his own property. He received permission from his town’s Board of Health.

For others, planning a natural burial poses greater challenges: Advocates of green burials say they know of no cemeteries in Vermont that yet allow the green interments they envision.

Passing the new law — which allows burials at a mere three and a half feet, where a more active biological soil mix facilitates rapid and natural decomposition — appears to have been the easy part. Now, supporters of the practice have to persuade dozens of cemetery operators to change policies. Many Vermont cemeteries require a five-foot burial depth and that coffins be placed inside buried concrete vaults, rules that preclude the simpler burials.

But Michelle Acciavatti of Montpelier and a half dozen other green-burial advocates stand ready to convince cemetery operators to change their policies. They are forming a nonprofit organization, Green Burial Vermont, which will produce a manual of best practices.

“The goal of the nonprofit is promoting environmental and socially conscious burials in Vermont,” Acciavatti said.

The group’s efforts could change the traditional image of graveyards.

Carl Anderson of West Berkshire, a wildlife biologist who is a member of Green Burial Vermont, said he envisions existing cemeteries adding green sections, as well as new graveyards that will use proceeds from the sale of natural plots to conserve surrounding acres. The dead could share space with sugaring operations, tree farms or hayfields.

But first, the organization has to allay a host of fears: that coyotes would scavenge for shallower, unprotected bodies; that some types of soils would inhibit decomposition; and that changing the layout of a graveyard to something other than rows of mowed grass dotted with shiny headstones would pose logistical challenges.

“There are just unknowns,” said Patrick Healy, manager of Montpelier’s city cemeteries and president of the Vermont Cemetery Association. “We just want to know what the best practices are.”

“A lot of the pushback is coming from the cemetery operators,” said Acciavatti, who toured the state last fall and winter advocating for the legal change. “There are a lot of misconceptions.”

For Acciavatti, 34, dealing with death is a passion and a vocation. She runs a business called Ending Well, which offers end-of-life planning and counseling. She’s also a hospice volunteer and co-facilitates a monthly “death café” in Montpelier, where attendees sip tea and converse about mortality.

She set out to become a neuroscientist. Then two close friends died in accidents shortly after she graduated from college. A year later, she was in a close-call crash herself.

“The first thing the trooper said was, ‘You’re so lucky you didn’t die.’ That percolated inside me for a while,” Acciavatti said. Before she knew it, Acciavatti was making a business of the thing most people don’t want to talk about.

With a soothing, nonjudgmental manner, Acciavatti manages to make talking about death easy. She hopes to take such conversations out of the shadows and into living rooms and dining rooms. “I used to joke that I was constantly ruining holiday dinners,” she said. “Now I’m everybody’s death friend.”

On a beautiful Tuesday evening in June, a dozen like-minded people gathered at a Montpelier tea shop for the death café. Heavy at times, the conversation also focused on uplifting moments families share as a loved one approaches the end.

Cheyette is a regular attendee. He readily shared plans for his own burial. Having what he sees as an environmentally friendly afterlife plan is a comfort, he told the group.

He, too, wants to change the notion that death is a taboo topic. “It makes me feel alive,” he said later, of the death café discourse. “I feel really good when I leave there.”

Acciavatti said green burials pair well with her desire to open up discussion about death. “We’ve become so cut off from death,” she said. “It’s been medicalized. It’s been commercialized. It’s been taken out of the home.”

In a traditional burial, an embalmed corpse is placed in a casket, which is then lowered five feet deep into a concrete vault and covered. The body decomposes, but the lack of contact with soil slows the process, wildlife biologist Anderson said. In the meantime, water interacts with the casket’s metal, varnish and paint, which pose a risk of contaminating groundwater, he said.

Green burials are intended to bring the body into closer contact with the soil. The unembalmed corpse is buried with no casket or in an unadorned wooden coffin. There is no concrete vault. Decomposition of soft tissue typically takes place within two years, depending on soil and hydrology, though bones take longer, Anderson said.

“With a green burial, you’re trying to put the body as close to active biological layers as you can without letting scavengers get at it,” he said. Hundreds of green-burial sites around the country do that at three and a half feet, without a scourge of scavengers, he noted. Vermont requires that deceased livestock be buried under two feet of soil.

But convincing cemetery operators to change their policies will take time, said Calais cemetery commissioner Jennifer Whitman. She joined the movement after hearing Acciavatti speak and would like her town to allow natural burials.

“This is a slow process,” Whitman said. “This is going to be the next 10 years.”

Just collecting contact information for the many cemetery operators throughout the state was a challenge, she said. Now, Green Burial Vermont’s goal is to help them work through logistical concerns.

People have many definitions of what constitutes a green burial, Whitman noted. Some want to be buried in the woods with no markers; others prefer a plain pine box in a shallow grave with a natural gravestone. Each cemetery’s operators have to figure out what they can accommodate, Whitman said.

Cemetery commissions would have to change long-standing policies, such as requirements for concrete vaults. Calais has such a rule, Whitman said.

That policy exists for good reason — to keep graves and caskets from collapsing, Healy said. When workers dig graves and mow cemetery grass, they often use heavy machinery, he noted.

Healy said that practice is one of the concerns he has about reserving part of a cemetery for green burials. He is not persuaded that wild animals won’t dig up natural graves, though advocates insist the fear is unfounded. And he wonders what the protocol would be for transporting a body to a gravesite without a casket.

“Will the public be able to handle seeing bodily fluids on shrouds?” he asked.

Nevertheless, Healy has had requests for green burials, and the Montpelier Cemetery Commission is considering what to do. One option is to phase in changes. “I think our first step may be pine boxes without vaults,” he said.

The Burlington Cemetery Commission is pondering the same questions.

“I would like to do more research and see if there’s a way to make it possible,” said cochair Allison Curran.

Burlington requires vaults and a five-foot grave depth at its two active cemeteries, Lakeview and Greenmount. Last week, Acciavatti asked the city commission for an exemption for a terminally ill client who wants a green burial. Commissioner Emma Swift expressed reservations about granting exemptions before setting a green burial policy, according to minutes of the meeting. The panel plans to consult the city’s attorney.

Meetinghouse Hill Cemetery in West Brattleboro may come closest to offering a green-burial option. The graveyard has a separate section where vaults and embalming are not required, manager Andrea Mitchell said. Three bodies have been buried there.

To the chagrin of green-burial advocates, however, the cemetery is unwilling to place bodies at depths of less than five feet. “The fella that digs our graves doesn’t want it, and I don’t want it. I think it’s too shallow,” Mitchell said. Asked why, she said, “I don’t know, but I don’t want to find out.”

Meetinghouse Hill charges $1,000 for a green plot, more than the $700 for a traditional one, because maintaining gravesites that are more prone to sinking is expected to be an additional challenge, Mitchell said.

If green burials gain traction in Vermont, the trend could give cemeteries a needed boost. Business is lagging, Healy conceded, as more Vermonters opt for cremation. Cemeteries are encouraging families to bury cremated remains, he said, but many choose to scatter or keep the ashes.

According to the Vermont Department of Health, slightly more than two-thirds of Vermont’s dead were cremated in 2014. Green burial advocates say cremation generates too much greenhouse gas.

Chris Palermo, owner of Perkins-Parker Funeral Home in Waterbury and president of the Vermont Funeral Directors Association, said that when he started in the business 40 years ago, about 15 percent of his customers chose cremation. Now, he said, 80 percent do.

He’s not yet had any customers ask for a green burial, but Palermo said he supports giving families the options they seek. Most importantly, he said, people should tell their families what they want, because, too often, they don’t.

“My sense is, people are becoming more comfortable with the discussion,” he said.

Cheyette is at ease talking about such matters. His wife, Sage Blue, who died in 2004, was cremated. Cheyette spread her ashes on their property, he said.

He hasn’t shared his burial plan with his three children but said he met with a group of close friends to explain what he wants. “It’s also posted on my refrigerator,” he said, next to his advance directive and do-not-resuscitate orders.

He explained why he wants his remains to nourish an oak tree. “I don’t want my body to be wasted,” he said.”

What living with a chronic illness has taught me about being with people at the end of life

(Image from Be Stigma Free )

I don’t think I’ve written about the fact that I have a traumatic brain injury, but I do. In my first semester of grad school, getting my degree in neuroscience, I was rear-ended in while stopped in traffic by a vehicle going somewhere between 50-70mph. Living with a TBI has helped me be better about being with people at the end of life. Because my illness is invisible I realize there are many symptoms people experience that are hard to explain, interpret, and/or predict due to the changes in brain function as people approach death.

Sensory input even in the form of loving touch can be incredibly overwhelming, painful, and overstimulating. If you are working with someone who can still communicate always ask before touching them (you should be asking because you should also never touch someone without their consent, but I digress). Ask every time because it may change. Even if the person can’t communicate verbally it is important to ask and look for body signals for clues as to whether or not touch is welcome or soothing. It can be both difficult for both patient and loved ones/caregivers to not use touch, but there are other ways to make someone feel loved and safe.

Sensory input goes beyond touch as well- auditory, olfactory, and visual stimulation can also be unpleasant. Again be sure to let your patient be your guide- they will either tell you or show you the safest and gentlest ways to interact with them. Understand this and help your patient and their families understand that there is nothing to be ashamed of in accommodating their stimulation responses.

Communication is often difficult. Finding the right mode of communication- speaking, writing, non-verbal communication- is essential for being a good end of life doula. Most of all, remember that patience is a crucial part of communication. Speak slowly, clearly, and directly. Don’t rush or mumble. Don’t shout. Watch to see how what you are saying is being received. Let your patient have the time they need to answer you and make a real effort to ensure you understand what they have said. (See my post on communicating with dementia patients for other tips on communicating.) Being heard is something that makes us feel like humans with value.

Never make assumptions. Both the most obvious and easiest to forget. Things that people may have relied on in the past to bring comfort may now serve as painful reminders of things they can no longer do or are leaving behind. Something that wasn’t an issue yesterday may be a major issue today. A big part of the mantra “meet your patient where they are” is allowing your patient to teach you about where they are in each moment.

Be not just willing, but truly able to settle in and be present with your patient. This ability to be fully present and aware of your patient and their needs is what will allow you to meet them in the most supportive and loving manner for them at that time. And that makes all the difference.