Life Doesn’t End With Death: Why I Wrote a Burial Depth Bill

I tell people my goal is to help everyone plan (and hopefully experience) their own good death- whatever that means to them- and that includes the right to choose a manner of disposition in accordance with their own ethics and values.

It came as some surprise when I learned that Vermont was one of only 2 states that had a required minimum burial depth, and that that depth, (at least 5 feet) meant that green burial wasn’t really an option for Vermonters. I happened to speak about this at the conference I held to launch my business in August and a Calais cemetery commissioner was in the audience.

At the end of the day she asked me to come to her town’s cemetery commission meeting because they had gotten requests for green burial and wanted to know what they could do to make that happen.

So, many people are probably thinking that burial depth doesn’t have anything to do with green burial. That what matters is being buried without embalming, in a biodegradable container or shroud, and without a vault (grave liner). While it’s true that these steps mitigate many of the harms caused by our current burial practices they don’t do a lot to also increase the benefit of burial. After-all the definition of green burial is two-part:

  1. Minimize harm to the environment
  2. Maximize benefit to the environment

At 5 feet or deeper there is not enough heat or oxygen for aerobic decomposition, the process is anaerobic, slow, and has by-products that aren’t very pleasant to think about. Nor is there a microbial community, insects, or root structures that could return any of the body’s nutrients to the soil above.

But at 3.5 feet the body is very close to the active layers of the soil, where there is a lot of insect activity, a robust microbial community, roots, oxygen, and sunlight to warm the soil. This adds up to rapid, aerobic decomposition with an efficient exchange of the body’s nutrients with the soil above. This is a way to allow the natural decomposition process to happen while still protecting the body from scavengers.

That’s right. For those of you worried that 3.5 feet is too shallow- it’s not. Part of the amazing thing about soil is what an excellent filter it is. The same properties of soil that fix and break down things like chemotherapy drugs, antibiotics, and trace amounts of heavy metals found in bodies also prevent the odors of decomposition from escaping in noticeable amounts. Humans can’t smell anything and scavengers aren’t drawn to the body. Burials at or around 3.5 feet are happening  in 29 states certified by the green burial council and have been for almost 30 years and none of them have ever reported an issue with scavengers.

Aside from oxygen, heat, insects, and microorganisms, here’s no magic recipe necessary for green burial- it’s natural decomposition, exactly as our ancestors were returned to the earth. And, the way many of our farm animals are today.

But as of today it’s not legal in Vermont.

Imagine my surprise, when after a meeting with the Calais Cemetery Commission in which I told them they would have to revise their by-laws to make vaults optional IF the law ever changed they said their representative would sponsor legislation to change the law and change the required minimum burial depth to at least 3.5 feet-  provided they wrote the bill.

So we wrote a bill.

So far, Vermont Bill H.3 (An Act Relating to Burial Depth), which was introduced in January, has passed unanimously out of the House committee charged with considering it and passed out of the House to the Senate with a majority voice vote. I’ve spent these past months learning how to negotiate the State House and touring the state to educate people about burial depth and green burial.

But all that has more to do with how I came to write a bill and less to do with why.

Most people who work in death-related fields have seen examples of “people die the way they live,” or, as my mother-in-law says “we don’t change as we get older, we just get more so.”

Here in Vermont land is important to people. I mean, this is true everywhere, but it’s amazing to see the number of small farms, sustainable land practices, farm to table restaurants, ethical planting by cities, sourcing of everything from kefir to coffee beans by local companies, the sheer number of people that flock to farmer’s markets and CSAs or grow their own food. Add that together with the amount of outdoor recreation and the importance of ethical enjoyment of the outdoors, the beauty of our seasons, the number of people who are here because either they or their parents moved here in the 70s to get back to the land… and, well, what you get is a state with a population that is largely very conscious of its impact on the environment and doing what it can to make that impact a positive one. This is true of hunters, farmers, skiers, walkers, urbanites, and hermits alike.

It’s a huge part of why I’ve been drawn here twice in my life, first for college and then again 3 years ago to live. Vermont is a state where the land is not only a reflection of its people, but its people are a reflection of the land. We are all touched and shaped by living here.

So much so that many never leave. Many do their living here until the day they die. And over, and over, and over again what I have heard people say is that when they die they want to return to the land. They want to become a part of the land they love.

They want their final act, their disposition, to be an act of giving back.

And until the law changes, that’s not really possible the way they envision it.

And that’s why I wrote the bill.

 

(Data referred to in this post comes from the Green Burial Council, the book “Greening Death” by Suzanne Kelly, and “Soil Microbiology, Ecology, and Biochemisty” 4th edition, edited by Eldor Paul)

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For those of you who are curious I’ve written a lot about the bill at a website and blog I set up to support Bill H.3 including my vision for what green burial sites can be used for- pollinator meadows and forest conservation. Please check it out: vermontgreenburial.wordpress.com

If you’re reading this and you live in Vermont and want to know more, find out where my statewide tour is taking me next (or book me in your town), or support the bill by contacting your State Senators all that information is on the website too. You can also email vermontgreenburial@gmail.com with questions, concerns, offers of support, stories about why green burial is important to you, or anything else about Vermont, green burial, and you.

I’m working with a great team of fellow green burial advocates and we’ve gotten some good press. You’ll find it all posted on the blog at the website, but here’s my favorite:

Shallower, greener graves gain ground in Vermont by Joel Baird of The Burlington Free Press

 

 

 

 

REBLOG: Günter Grass: ‘When the time comes, we will rest on leaves’

An exclusive extract from the Nobel prize-winning author’s final work describes how he and his wife imagined their farewell

This is one of the most beautiful things I have ever read. A stunning meditation on mortality, green burial, and our place in the natural cycle of life….

from: https://www.theguardian.com/books/2016/nov/19/ By Günter Grass

“At long last, having discussed our joint project many times, testing and rejecting various ideas at the kitchen table, we had reached a decision; the master carpenter Ernst Adomait sat across from us. The conversation began over tea and cakes, hesitantly at first, but soon underway.

Adomait has worked for us for years. He’s built standing desks and bookcases, and various smaller items for my wife. We told him what we wanted, never defining it as our last will and testament. After looking through the French window into the summery, windless garden, he agreed to take the job and make the boxes. He suggested they be measured separately for length and width, and we agreed. He had no objection to our request for two different woods: pine for my wife, birch for me. The boxes would be of equal depth, but hers would be two metres 10 long and mine two metres. My box would be five centimetres wider, to match my shoulders.

When I said “not tapered toward the foot,” which was once standard and may still be customary, he nodded in agreement.

“A costly method,” he warned. Alternatively, screws could be inserted in carefully drilled holes. I favoured hammering in old-fashioned nails with solemnly resounding blows at a given signal. In the postwar years, I often put up gravestones in cemeteries while working as a stonemason, and once made a deal with a gravedigger: five Lucky Strikes for a good dozen hand-forged coffin nails; later, much later, they appeared as rusty assemblages in drawings, lying this way and that, a few crooked, each with its own shape. And every nail had a tale to tell from its past. Sometimes I added dead beetles lying on their backs, and bones large and small. In one drawing, nails and rope hinted at a death only humans could devise. Soft pencil, hard-line pen and ink drawings, all of them still lifes, a few found buyers intrigued by their cryptic nature.

Adomait seemed to follow my digressions more out of politeness than interest. Then we chatted about current affairs: the ludicrous rise in the price of petrol, the uncertain summer weather, the now-familiar bankruptcies. I set a bottle of mirabelle plum brandy beside the empty teapot and what remained of the cakes. “Just a small glass,” said the master carpenter, who still had to drive home in his truck.

Illustration by Günter Grass
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Illustration: Günter Grass

I mentioned Wild West films in the course of which this sort of plain carpentry grew in demand. My sketch on a paper napkin proved unnecessary; the idea was clear enough. The boxes would be finished by autumn. We assured him we were in no hurry, but laced the conversation with hints about our combined age.

The style of the handles was still under discussion. I wanted something in wood. My wife favoured strong linen straps. In any case, there would be four on each side, to match the number of our children. The way the boxes would be sealed was left open for the time being. The conversation was down-to-earth at first, and dealt with practical details, but soon turned almost cheerful. When I suggested setting the lids loosely on top – “after all, the weight of the earth will hold them in place” – or fastening them down with carpenter’s glue, Adomait permitted himself a quickly fading smile, then declared pine and birch dowels more suitable.

By the time Adomait left, we’d decided on wooden dowels and rough linen handles on each side of the boxes. “We can count on him,” my wife said. “He has always delivered on time.” The interior decoration of the boxes hadn’t come up that afternoon, since it didn’t involve carpentry. The only thing we were sure of was that padded upholstery, cotton or down, was out of the question. That sort of expense might be customary in commercial coffins, but we weren’t looking for comfort.

It was only at breakfast, after my usual complaint that my mattress was too hard, and when the dishes had been removed and the tabletop was bare, that an idea came to me, somewhat vaguely at first, but soon assuming a clearer shape. I suggested that after the obligatory washing of our lifeless bodies, we be laid to rest on a bed of leaves, then covered with more leaves by our daughters and sons, using whatever Nature offered, according to the season. In spring, budding leaves would cover us; in summer, fruit trees – cherry, apple, pears and plums – could lend their lush green, mature abundance. Autumn, my preferred season, would make its brightly coloured offering. And dry, rustling leaves could deck our naked bodies in winter. The old walnut tree, the copper beech, the maple would provide variety. A handful of walnuts could adorn our leafy cover as an extra feature. Only the two chestnut trees outside our house, sickly for years, would be forbidden to add their rust-afflicted foliage. I also requested there be no oak leaves.

At any rate, when the time comes we will rest from head to toe on leaves and be decked with leaves. At most our faces will be free, perhaps with rose petals on our closed eyes, a custom I witnessed during our stay in Calcutta: there I saw some young men trotting along, carrying the body of an old woman on a bamboo pallet to a cremation site on a tributary of the Ganges. Bright green leaves were pasted over her eyes.

In addition, my wife chose not to forgo a shroud – one she said she would sew herself.

That seemed preparation enough. Over the course of a time no longer ours, all would decay, the box and its contents. Only bones large and small, the ribs and the skull might remain, unlike the bodies buried in the bog in Schleswig-Holstein, now placed on show under glass in the Schloss Gottorf Museum. Those bones turned soft; you could still see tissue, skin and knotted hair, as well as bits of clothing, relics of a ghastly prehistoric age, of scientific value, eagerly sought as fodder for bog-bodies stories, like the one of a young girl whose face was covered with a strip of cloth in punishment for some atrocity that could scarcely be imagined.

The skull, on the other hand, has always harboured a rich store of meanings, from the ingenious to the ludicrous. Piled high or fitted into walls, skulls rest in the vaults of monasteries. A skull adorns the pirate’s flag, serves as the logo of a soccer club. It signals a warning on cans of poisonous, explosive or flammable material and appears as a motif in the fine arts, in oil paintings and copper engravings like the one by Albrecht Dürer showing Saint Jerome in his study. Withdrawn from all worldly concerns, he bends over his books, while the fleshless skull beside them reminds us of the transience of all living things, that from birth on, death is a settled matter.

But we weren’t that far along yet, in spite of our increasing frailty. The planks for the boxes we’d ordered could be cut to size, but a few questions were still in the air that were harder to answer: what carpenter would build a refuge for the wandering soul, whose existence we both desired and doubted? What facade would reach high enough for the climbing ivy of immortality? How might we be reborn, as worm, mushroom, or resistant bacteria? What other beings might inhabit the void?

In addition to ivy, we could spend a rampant afterlife as weeds no gardener could control. And what of creatures that creep and fly? With Nature’s all-powerful help, I’ve always hoped to be reborn as a cuckoo, drawn to the nests of strangers. One year after another holds great promise. Even leaving God and his promises aside, speculations remain that won’t fit in our boxes. Only the transitory nature of their contents can be guaranteed: the rigidity of the corpse; the greenish-blue discolouration of the skin, gassy, bloated and soon bursting; the onset of mould and all the other signs of rot; the worms.

Things we still need to think about – the final question: where should we be laid to rest? A good 30 years ago, when we were living in the city and first thought of looking for a plot, I favoured the cemetery in Friedenau. But my wife had something against Berlin as our final station. In the end I did too, since soon after the wall fell, the city’s claim to be the nation’s capital gave rise to too many shiny bubbles of loudmouthed boasting.

Having moved many times, we considered various cemeteries – with Lübeck as a cosy backdrop – but reached no decision. One near the railway station, where you could sense rows of graves hedged by boxwood trees, would have matched my endless longing to travel. But since we wished to be at rest, a double grave in our garden, between the studio window of my workshop and the shed, with nothing but the woods beyond, would have been our preference. But in spite of our country’s solemn canonisation of private property, burial on one’s own land is forbidden by law. Cremation remained the only way out, followed by a fake theft of the urns by our sons, so our ashes could eke out their shadowy existence behind the blackberry hedge or in the lilac bushes. But having no wish to deny the worms our mortal remains, we decided against ashes and agreed to talk with the pastor of Behlendorf about making the local village cemetery our final address. A meeting was easily arranged. The pastor, who turned out to be quite affable, if somewhat overburdened by the spiritual welfare of his current souls, understood our aversion to resting among the rows of graves, since as individuals and newcomers we were unfamiliar with the neighbourly or familial entanglements of the villagers at rest there. Even our tactful suggestion that as heathens we would feel out of place near the medieval outer wall of the chancel was, if not warmly received, at least quietly accepted.

We finally settled on a tall, solitary tree off to one side. Beneath its spreading branches I paced out a rectangle the size of a quadruple plot. The pastor told us that this was in an area bordering the cemetery, once a pastoral potato field, unused for some time now, lying fallow, so to speak, although at present it gleamed invitingly as a meadow.

During a pause in the conversation we pictured ourselves lying there, or as the survivor visiting the first to go. As decorative shrubbery I suggested herbs: marjoram, sage, thyme, parsley, anything used in the kitchen. On the eastern edge of the measured quadrangle, an erratic boulder would serve as a gravestone. The stonemason would have the job of carving our names and dates in cuneiform letters. “No other inscription or quotation, please.” The boulder would have a broad base that asserted its weight without being overpowering.

I paced out the approximate size of the plot again, this time farther from the root system of the tree. Getting the church council’s approval for what we wanted, the pastor assured us, would pose no difficulties.

When we got back home, we were a little tired. I treated myself to a coachman’s glass of calvados. On the kitchen radio the evening news reported various crises competing for the limelight. According to the weather forecast, rain would continue in the south only. We didn’t tell our dog about our successful search for a resting place.

One Saturday in mid-September, after the second pacemaker they’d implanted declined to give my heart the help it needed, and my lungs began to repay me for decades of self-indulgence in handrolled cigarettes and well-stuffed pipes, we were relieved to see the carpenter arrive with the boxes. Ready to use. The look of them, the bright wood, each with its own grain, put us in a good mood. Even Adomait, a serious man on principle, seemed satisfied, and confirmed his mood by attempting a smile.

We had cleared a temporary space for the boxes in the back of the cellar where we kept our garden tools and deckchairs. Plastic covers would protect the boxes from flyspecks and mouse droppings. Seeing them side by side like that reminded me of a special term for coffins from the old East German days: Erdmöbel, earth furniture. The eight handles stood at precisely measured intervals. Although well seasoned, the wood smelled new. Without lids the interiors beckoned invitingly.

Illustration by Günter Grass.
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Illustration: Günter Grass

Before leaving, Adomait did not rule out my now customary offer of a shot of plum brandy in celebration. On top of the bill, which was more than reasonable, he placed a clear bag of wooden dowels for the lids; he had drilled matching holes in the upper rims of the boxes. There were several extra dowels in the sack. As the carpenter had suggested, my wife stored them carefully in a drawer of her desk where, along with the usual odds and ends, she kept our passports, the dog’s vaccination certificate and other important papers.

The very next Sunday, with no visitors scheduled, we removed the protective covers, as well as the lids lying loosely on top, took off our shoes, and lay down in the boxes. They were the right length and shoulder width. We made no comment, so solemn was the anticipation of our laying out.

How strange to hear each other breathing. My wife helped me climb back out. When we had replaced the lids on the boxes, we spread the covers over our final homes and gave free rein to our thoughts, which remained, however, unspoken. Shortly afterward, my wife said she was sorry she hadn’t taken a picture of me in the box; she would be sure to have her camera with her next time. “You looked so content,” she said.

Once we’d had our trial lie-in, as we called our visit to the cellar, life went on as usual. While my wife was preparing supper – two perch with jacket potatoes – I sat in front of the TV watching the usual Sunday evening world news with its images from around the globe. When I saw the two fish lying side by side in the pan, with cucumber salad on the side, the comparison seemed so apt I couldn’t help joking about it.

The boxes have been waiting ever since. From time to time we remind ourselves how beautiful they are. I’m too shy to ask my wife if she’s finished sewing her shroud. But I know we’ll have plenty of leaves to clothe and cover us. They will always be available: newly fresh in spring, lush green in summer, brightly coloured from October on, faded and brittle through the winter.

So let another year or two pass. We’re not in any hurry. At the moment my pacemaker is doing its job, as promised. Even the children and grandchildren, when they come by for a brief visit and bring up the deckchairs from the cellar on sunny days, have grown used to the sight of our master carpenter’s custom work.

Lately my wife has started storing dahlia tubers and other flower bulbs in her box for the winter. Next March – we hope – we will plant them in the flower beds and cover them with fertilised soil from the garden.

Text and graphics copyright © Steidl Verlag and Günter & Ute Grass-Stiftung 2015, English translation copyright © Breon Mitchell 2016. Of All That Ends is published on 1 December by Harvill Secker. To order a copy for £10.65 (RRP £12.99) go to bookshop.theguardian.com or call 0330 333 6846. Free UK p&p over £10, online orders only. Phone orders min p&p of £1.99.

Thank you for your service

One year, one month, and eighteen days.

That’s all most of the people in his life know about his time in Korea.

But I know he volunteered. His father had driven an ambulance in World War I and his older brother had become a doctor so he became a medic. He was responsible for the health and well-being of the men on “his airstrip” a pit-stop for planes to refuel after unloading napalm before returning to their aircraft carriers safe at sea.

Once a Korean woman brought her baby to him. As he held its limp body he realized he had no way to tell her the child was already dead.

He is dying now, and though he loves his wife, his daughter, and his god fervently it is the face of that woman slowly realizing her baby was dead that he sees every night.

And has seen every night since that day.

But, until a few months ago he had never told anyone that story. He never told anyone that coming home from combat is “living in a nightmare only worse, because in a nightmare no matter how bad it gets you wake up. And, you never wake up from coming home from combat.”

When he first got home he built a wall between himself and his experiences with alcohol. Through sheer will he overcame his addiction. He found god and he found love. He found a calling. He will be the first to tell you that he has lived not just a good life, but a rich life, a beautiful life that still moves him to tears when he reflects back on it.

What he will never tell anyone is that nothing in his life makes up for the darkness of what he experienced during his “one year, one month, and eighteen days.”

Except me.

He doesn’t understand why these memories are so present now and understands even less what compels him to talk about them after a lifetime of leaving them untouched. Sometimes when his wife visits and hears us talking she shushes him, literally, and asks why he would want to waste his time remembering that.

I will not share any more of the secrets he has shared with me here. I will say he has happy stories, funny stories, the types of callow anecdotes you would expect about one’s first time away from home. Stories that make me laugh. But the stories he comes back to, the stories he needs to tell again and again are not like that. Those are the stories that when I finally say goodbye and make my way back to my care paralyze me with weeping.

Telling these stories is not therapeutic for him. They leave him feeling like his “bones are tired.” But he tells them anyways. Even when he is half-asleep I can hear him telling the stories. After a lifetime of not-telling, now he needs to speak, to share, sometimes even re-live.

He has sheltered me from a ground-assault; begged for a chance to give a young soldier penicillin instead of shipping him off to the surgeons for amputation; screamed as a plane came in too fast on his short landing strip and exploded in the jungle beyond. Then he comes back to his room, lost and shaken, impossible to comfort.

He wonders if he is a good man. He prays that his god will understand. It was combat. He did what he could. He didn’t hate anyone, but he didn’t want to die.

In my role of as an End-of-life Doula, I can only listen. I have known combat veterans- in my family, the parents of my friends, my peers. But I always been the one not told. The one, sheltered or deemed too removed to ever understand. I don’t know if every one who sees combat comes back with a part of themselves no amount of goodness can make feel better. But this man did. And so I stay present for his darkest moments.

He volunteered one year, one month, and eighteen days. But what he gave was his life. Not his mortality, cancer will take that, but his self. Because part of him never came home from Korea.

When today first became a national holiday it was to celebrate the 11th hour, of the 11th day, of the 11th month. Armistice Day. The beginning of the end of a war that was supposed to end all war. Now it seems war is an inevitable part of our reality and so today represents a day when we honor all those who have served.

I can’t help but wonder if we really understand what they sacrifice.

 

 

Stop me if you’ve heard this one before…

(Image from DailyCaring)

I have a background in neuroscience and so the volunteer coordinator for my local hospice often assigns me to patients with cognitive issues. I guess having an understanding (at least as deep as science itself can offer an understanding) of dementia and mental illness does help me comprehend a bit of why communication can be difficult for these patients. But, I honestly don’t think it helps me be a better caregiver to them.

No, what helps me, was once when accompanying my mom and grandmother to a doctor’s appointment when I was still a child reading one of the “health info” posters:

Speak precisely
Ask direct questions
Be patient

I can’t even remember if it was related to speaking to people with dementia or not, it’s certainly good advice for communicating with people who do but it’s just as good advice for communicating with people who don’t.

I think most human beings feel a fundamental need to be understood by other human beings on an emotional level. When I visit with patients who are cognitively impaired I find that if I give them room they have lots to say. I’ll admit that sometimes it’s hard to figure out what it is they want me to understand, but I think it’s important to recognize that what’s being said is crucial for me to listen to- everyone deserves to be heard, even if they can’t be literally understood, and often it is possible to discover the meaning. Learning to listen on an emotional level is key when communicating with patients who have cognitive impairments.

For example, a few weeks ago a woman was adamant repeating: “my father has owned this land for 900 years!” I finally pieced together that she was upset about either her new hall-mate or the new patio or both- change is never easy but when you rely on routine it’s even harder. Now whenever I visit I make sure to mention her no-longer-new hall-mate,  and comment about how nice the new patio is. My hope isn’t to help her remember these changes but rather to acknowledge them as new things in her life.

I recently was asked to spend some time with a gentleman who has relatively mild dementia- he knows where he is, who he is, who his loved ones and visitors are, and even that he is on hospice. “Be careful,” a LNA warned me as I got ready to visit him the first time, “he’ll tell you the same story over and over and over again if you let him.”

Why wouldn’t I let him?

In the weeks I’ve spent with him I’ve noticed the stories he repeats seem to correlate with his moods. As a veteran, it seems when he is telling war stories he is struggling a bit with his imminent death. The stories are never exactly the same, and often he’ll say “I never thought I’d feel like that again.” Or, “So believe me when I tell you I know what it’s like to stare death in the face.” He tells stories about his childhood on days when his family is around. Stories about his time in college always indicate a particularly good mood. Stories about his brother indicate (to me) he’s feeling contemplative.  “Stop me if you’ve heard this one before.” He always says, usually before repeating something for at least the 3rd time. But I don’t stop him. “I might have heard it before,” I say, “but I’d love to hear it again- tell me more about….” and he does. Over time he come to talk less and less about the war and college, and more and more about his childhood and his brother. “You’re doing a lot of thinking today.” I can say. “I bet you love that your daughter is home.” I think in his own way he’s moving past his fear of death and longing for youth, to wanting to express his love for his family.

Another patient recently who died without losing any of her cognitive facilities fretted over her husband, who was suffering from moderate Alzheimer’s Disease. Both were devout Christians. As she began the active dying phase and was asleep for large chunks of the day I spent more time with her husband. I watched his children scold him for not remembering their names and excluded him as they grieved for their mother- “you don’t even know who she is anymore,” they said. I made sure to sit with him. He would tell me, every visit, for however long I sat with him, about heaven. It was all he talked about, heaven and how it was a place where the body was healed and he and his wife would live together forever. He knew who is wife was, he knew she was dying. His stories of heaven were his way of comforting himself- and asking for comfort. He needed to know they would be together in heaven. He needed to know she wouldn’t be suffering. So we talked about what heaven meant for him- a place of peace and love and happiness. I like to think it helped.

As I said before, everyone deserves to be heard. And what I mean is, everyone has something they want you to hear. It’s always worth listening.

PAIN

Pain

Pain… it’s hard to know where to start and I know even writing this sentence that there will be many more posts I have to write on this topic. Pain is physical. Pain is emotional. Pain is spiritual. Pain is existential. Pain is intimately related to suffering and is an important metric for quality of life.

From a neuroscience perspective pain is a bit of mystery- we certainly don’t understand the causes as well as we want to, and we understand how to treat pain even less.

One of the promises we try to make and keep to those at the end of life is that we can manage their pain. But, this isn’t always true.

I recently found myself caring for two men. Both dying from end-stage cancer of nearly everything. Both in pain. The first man responded well to pain medication and his physical pain was under control. The second man refused pain medication because… well, he’s of that stoic generation. The first man was pleasant, charming, and sweet. He was a dapper dresser, always relaxed, and up for trip outside (weather permitting). The second man was grumpy, depressed, and extremely difficult to get to know. Usually he ordered me to leave before I could even say hello. His body was tense, his facial expression a grimace, and he jiggled his legs. He lay in bed day in, day out. Knowing his prognosis, I could only imagine how much physical pain he was in. How much he was suffering.

Then, things changed.

The second man, for reasons of his own, decided to try taking pain medication. The hospice nurse worked with him to titrate up from a minuscule dose to one where he felt his pain was under control but he wasn’t (as he said) “loopy”. The first man experienced a family tragedy. The second man became cheerful, inquisitive, solicitous. He was full of stories and was always sure to make sure I was coming back the next day so we could talk again. He got up as often as he could, marveled over his garden, and told his wife he loved her so often she got embarrassed. The first man retreated entirely. He stopped eating, he stopped caring about his clothes, he stopped wanting to get out of bed. He was always polite, but never engaging. He stared into space, tears occasionally filling his eyes. His silence was impenetrable. Knowing of his family tragedy, I could only imagine how much emotional pain he was in. How much he was suffering.

I don’t want to give the impression that these two cases contrast as neatly as I’ve presented them. Sometimes physical pain is not treatable, but it was for my patient. Sometimes emotional pain can be “treated” by talking, by presence, with time, but it wasn’t for my other patient.

What makes me smile as I write this is  the other change that occurred. As the second man felt better physically he no longer needed to be touched. He liked a quick kiss from his wife, or to place a peck on her cheek, and he didn’t mind supportive arms as he moved around. But, he was too busy moving for any sort of therapeutic touch to be invited. My interactions with him became almost completely listening based. But, after the tragedy in the life of the first man, who had been very physically reserved, I could hold his hand for hours in silence. It became a habit, with his permission, to stroke his hair and give him a kiss on the brow when I left. He didn’t have much to say to me, but we were physically connected in his space.

I think that what this experience taught me is that this promise to manage pain is overly simplistic. Yes, we will do our best to meet your physical, spiritual, and emotional needs in such a way that they do not cause undue or unnecessary pain. But we will also be with you in the state that you are in. One of the reasons I love Dr. Alan’s Wolfelt’s “Companioning” philosophy is that it takes away the need of the caregiver to “make things better.” By focusing on empathy, as companions we need only come alongside and be with the person as they are- be present physically and open emotionally- following their lead.

The promise to manage pain is not a promise to treat pain, it is a promise to not abandon people to pain even when we can’t treat it.  It is a promise of presence. It is promise that if you must suffer, you will not suffer alone.

 

 

 

 

For those not familiar with Dr. Alan Wolfelt or “Companioning” I highly recommend looking at his website. Taking one of his formal courses is a dream of mine.

This explanation of how he came to the term is from his ADEC Keynote Speech in 2005

“Many people asked me about the title of my talk for this conference. Everyone was curious how I was going to distinguish “companioning” from “treating.” The word “treat” comes from the Latin root work “tractare” which means “to drag.” If we combine that with “patient” we can really get in trouble. “Patient” means “passive long-term sufferer”, so, if we treat patients, we drag passive long-terms sufferers. (Doesn’t sound very empowering to me.)

On the other hand, the word “companion,” when broken down into its original Latin roots means “messmate”: com for “with” and pan for “bread.” Someone you would share a meal with, a friend, an equal. I have taken liberties with the noun “companion” and made it into the verb “companioning” because it so well captures the type of counseling relationship I support and advocate.”

 

 

Death Cafes

Image from DeathCafe.com

Have you been to a death cafe? It is exactly what it sounds like- a place where people gather to share their thoughts about death and dying, and sometimes there is cake!

Death Cafe was the brain child of Jon Underwood in England who wanted to

‘to increase awareness of death with a view to helping people make the most of their (finite) lives’.
Since 2011 over 34oo Death Cafes have been held around the world!
I have had, as the cliche goes, the honor and the privilege of co-facilitating the Montpelier Death Cafe since I first moved to Montpelier in 2014, just one month after it started! We will celebrate our 3rd anniversary in December and it is amazing to see how the community has evolved in that time. Every month the meeting is attended by regulars and new people and every month the conversation comes straight from the heart.
Most of all every month every person says they leave feeling uplifted.
It is not so strange today that people want to talk about death, but it isn’t yet a common occurrence. The magic of death cafe is that everyone is there because they WANT to talk about death and we all learn and grow from each other’s thoughts- even when they are radically different from our own.
When I can I like to write what I call my “musings” after the meetings- using the most poignant quotes people have shared. If you’re interested in reading them you can check them out on the Montpelier Death Cafe Profile on Deathcafe.com
If you’ve never been to a death cafe I hope these writings will inspire you to go. And, if there isn’t one near you I encourage you to start one. The instructions all there, and trust me, you are not alone in wanting a safe (and fun!) place to talk about death!

How did I get here?

Image via AbsurdWordPreferred

As part of Dying to Know Day (#D2Kday) yesterday I hung flyers for my conference Ending Well: Practical Conversation About Preparing For The End Of Life August 19-21st around my town of Montpelier, VT. I really wasn’t sure what to expect hanging flyers for a death related event but I was pleasantly surprised by how willing, and how curious, most of the people were.

I certainly wasn’t expecting the most common question to be “how did you choose to be an end-of-life specialist?”

I think most people can’t imagine waking up one day and deciding to dedicate their life to changing the way people plan, prepare, and experience their own death.

I certainly didn’t. But that’s pretty much what happened.

I used to be a neuroscience consultant for the office of ethics at a major hospital. I have an MS in neuroscience, and part of my undergraduate major was applied ethics. It was a great position but I wasn’t quite happy. I don’t even remember how the conversation started, but one day my friend Krystina Friedlander, who is a birth doula at Baraka Birth, looked at me and said “you know, you should be a death midwife.”

And here I am.

Of course it wasn’t that simple. To start with I’d never heard of a death midwife. And there wasn’t a Wikipedia page for it (that just went up in March of this year) but there were websites for women, and a few men, in the US and in Canada who were offering trainings. As I read about what their work encompassed, I just knew… I should be a death midwife.

The journey from that realization to becoming an End-of-Life Specialist began over two years ago when I started learning about death midwifery, from there I became a hospice volunteer, a home funeral guide, an advance care planner, a patient advocate, a birth and bereavement doula, a community educator, and a memoir consultant. It is a journey that evolves with every person I work with and almost every person I talk to and someday will include clinical pastoral education, formal companioning training, reiki and things I know I haven’t even thought of yet. It is a journey that I wrote about in one of my very first blog posts: End-of-Life Specialist but in that post I did leave out the beginning. And it seems the beginning is what people want to know about.

Perhaps it is because end of life work involves tremendous vulnerability- imagining or experiencing the end of your life is incredibly emotional. People want to trust the person guiding them through it.

Perhaps it is because the person asking has had an experience with a loved one dying and are inspired by that experience to find their own path to death-related work and want to know where to begin.

Perhaps because people think it must take some extraordinary, or brave, or stoic to commit to the path I did.

Whatever the reason, I am glad to be asked. Because I hope that my story does convey my passion for being of service in this way, and the dedication I show the people I work with. Because I hope many more people do step on this path. And most of all, because I am an ordinary person following her heart and anyone with heart can do this work.

I’m here.

Maybe you’ll join me.