Re-framing Advance Directives as Patient Safety Tools

(Many thanks to Emily Eliot Miller of Death Jewel for inspiring the thoughts in this post)

A woman I know was recently admitted to the hospital for observation after a concussion. She was shocked to find a DNR order pasted on her door.

I think the majority of conversations about Advance Directives focus on making sure your wishes are documented. I know in my experience they also always come along with a conversation about over-treatment: unwanted hospitalization, unwanted CPR, unwanted dependence on machines to sustain life.

But, as my good friend and colleague Emily Eliot Miller points out, there is a pressing reason to separate the two conversations. Because for many people, the fear is not over-treatment, but under-treatment.

As the national dialogue on racism in American institutions continues, one of the many important conversations is about how people with black and brown bodies are treated differently in our medical institutions. Another conversation is about how the white, American medical institutions have preyed on and discarded those with black and brown bodies, resulting in a deep-seated mistrust of these institutions that has yet to be properly addressed, let alone rectified.

And, there is an intersection between the implicit racism of our medical institutions and the treatment of those with bodies that are also “othered” – those with disabled bodies, bodies that don’t match their preferred gender, those with chronically ill bodies, those with fat bodies, also face the very real fear that their bodies will be treated differently. Or not at all.

So, yes, an Advance Directive is a way to document your wishes for medical treatment. But let’s also start talking about it as a way to ensure patient safety. To make sure every person gets the treatment they WANT.  Treatment many are afraid they will not get.

It sounds simple, but it won’t be easy. We have a long way to go to make sure every single person is treated as a whole human by our medical system. But an easy first step is to stop talking about Advance Directives as a way to prevent over-treatment and to start talking about Advance Directives as a way for patients to feel seen and heard as whole humans.

Let’s make Advance Directives into tools for patient safety.

The color of your skin should not be a reason it’s easy to die

I want you to do a thought experiment with me.

Imagine an ordinary day. You leave the house to go to work. You tell the people you live with goodbye, maybe you love them and tell them so, but you leave with the understanding that you will come home at the end of the day and be together again.

Now, imagine on your way home there is a terrible accident. And you die. You don’t make it home. And the people expecting you to come home have to be told that you’re never coming home again. You’re dead.

It’s devastating, right? It’s unfair. It’s sad. It’s the way I come to play a role in some people’s lives- as a funeral director. As the one to handle the body. As the one to hand tissues to the people who are suddenly in love with someone who is dead instead of with someone who is alive. It’s never not sad.

And it was an accident, right? Maybe you were speeding or changing the song or just tired. But you didn’t do anything wrong. It’s not your fault. But you’re still dead.

Do you see where I am going with this?

I’m white. If I leave the house at night, I come home to my husband who is sleeping soundly because we can’t spend our lives worrying about accidents and there’s no other reason why I wouldn’t come home.

But for George Floyd, and Breonna Taylor, and Ahmoud Arbery, and Tamir Rice, and Sandra Bland, and Iyanna Dior, and Tony McDade, and Amber Isaac, and far too many others-

when they left home their families worried about more than freak accidents. They worried that the color of the skin of the person they loved might be a reason that they wouldn’t come home.

And they were right.

That accident? That one thing between you and coming home to your loved ones? That’s not the only thing that Black Americans have to worry about keeping them from coming home. It’s not what keeps mothers and fathers and sisters and brothers and children and friends and lovers of people with black skin awake.

Too many Black Americans don’t come home because they are murdered. They are murdered by people who are supposed to keep us safe. By people who have bought into the systemic sickness of our culture that teaches white people that black skin is dangerous, is a threat, is not human. By a medical system that devalues self-reporting of symptoms because black skin is seen a “tougher.”

It’s a fact that in this country the color of your skin is a very real factor in whether or not you come home.

Come home from going for a run. Come home from giving birth. Come home after going to sleep in your own bed. Come home from playing in the park with your friends.

That’s more than devastating. That’s unacceptable.

And it needs to change.

Life is short. And it is so very easy to die simply by nature of being human and mortal and existing in the world.

We can’t change that.

But the color of your skin should not be a reason it’s easy to die.

And we can change that.

We can make it equal for all people by standing up and fighting the systemic racism that pervade every institution in this country. We can have conversations in our own homes and families, in our communities, on a nationwide level, about racism and how to combat it. What we cannot do is remain silent.

We can do better. We MUST do better.

Black Lives Matter.

 

Hear Me On VPR’s Morning Edition

Sam Gale Rosen, the producer for Morning Edition on VPR, set up a conversation between myself and its host, Mitch Wertlieb, about acknowledging death at a distance. It aired on 5/26/20 and although it’s just a few minutes, I think captures the heart of my recent posts and work.

Have a listen:

https://www.vpr.org/post/raise-toast-play-song-send-card-acknowledging-death-distance

Read my previous post Grieving and Caring During the Pandemic COVID-19 for a full list of ways to mourn during the time of social distancing, how to support someone who is grieving, and tips for designing a graveside service and limiting attendance.

 

Or read the transcript:

One of the cruel realities of life since the COVID-19 pandemic struck is how it has changed the way we deal with death. When a loved one dies, there’s no longer an opportunity for closure, for saying goodbye among the close community of family and friends with words, tears and a heartfelt embrace.

But Michelle Acciavatti is thinking of other ways to bring solace to Vermonters. She’s one of the funeral directors at Guare & Sons funeral home in Montpelier.

Michelle Acciavatti spoke with VPR’s Mitch Wertlieb. Their conversation below has been condensed and edited for clarity.

Mitch Wertlieb: This is the age of online-everything, as you know. And that was true even before this pandemic hit. But you have said that simply having an online funeral as a substitute is really not the best solution for everyone. Why is that?

Michelle Acciavatti: It’s not just the physical distance, but it’s also having to communicate through a screen using technology. I think the internet is a wonderful tool for connecting. But if you’re not comfortable with it or you’re not familiar with it, or you simply don’t have access to it – and these are things that I think are particularly true in Vermont – it’s maybe not the best tool.

Yes, they’re coming together, but are they having the same needs met in that way? Or are we, in our striving for something that feels normal and familiar, overlooking kind of what is the purpose of coming together?

What are some of the suggestions that you have discussed with the people you work with and with others in the community who may be grieving that are outside of this, as you were just mentioning, this online kind of presence?

So one of things that I’ve been doing working with families, is to have them actually put an ask right in the obituary that says what can people do to let you know that they know that you’ve had this loss happen and that they’re thinking of you, that they feel for you. What’s something that would do that in a way that honors specifically the life of the person who has died. 

That I think has been resonating with people, because people do still read obituaries, they still get shared. It’s a great way for people to find out that someone has died. So it’s a really great way to spread a message that says, you know, “I would love to even just get cards.” It can be as simple as that. People tend not to send cards anymore.

More from VPR: ‘My Mother Was My Best Friend’: Remembering A Life Lost To COVID-19

When I was in a spot when I was grieving, when my mother-in-law passed away, the number of cards that I got, the time that someone took to hand-write a message to me, really meant a lot. So I’ve shared that with families, and that’s been an ask that’s gone out. And one thing that people always know is if you don’t have someone’s address, but you do know the funeral home that they’re working with, the funeral home can make sure that things do reach families.

Some people have asked for everyone to raise a toast at a specific time. And then there can be things that come out of that that perhaps you can ask somebody to take a picture and send you a picture of them raising that toast, or send you a little note after they’ve done that. So it’s a collective experience, that you’re not in the same room and you’re not doing it, but you’re all doing the same thing. And then you can talk about what it felt like to raise a toast to that person. What was going through your head, what made you think about that person.

Vermont, especially such a small state, so many people, especially in smaller rural communities, they really know one another. Some have for decades, maybe their whole lives. How should we be thinking about and dealing with those ripple effects on the death of a community member?

I think this is so important because generally, that’s what a wake or a visitation does, is it allows all the people whose lives have been touched by somebody to come together. And what’s interesting in watching that happen, you know before the pandemic happened, is to see the circles of people. These are all the people that knew somebody in high school or knew them at this job or knew them when their kids were small and they coached Little League or something like that.

When you take away that visitation, that’s something that I worry about, people having a feeling that they can’t express or explore. And I think that’s another thing, where just the very small gesture of reaching out and even saying, “Hey, you might not know me, but I always used to run into your wife at the coffee shop, and we always had the nicest conversations, you know, before we’d go our separate ways to work in the morning.” Or just something, just sharing that memory, how you knew somebody. Or just, “I know how important they were to the food bank. And I’m going to make a donation to the food bank in their memory because of all the work they did volunteering there.”

And again, it helps the family feel seen, but it just also acknowledges our communities. I mean, even here in Montpelier, where I live, I mean, it’s still a small town for being a city. And when people die, to recognize that, “Hey, this town is going to be a little different now without this person,” and the role that they played in it.

But nothing is too small or too silly, I think, for the family never to appreciate. And also to make a difference in your own life, and to acknowledge what you’re feeling and to get those needs met as well.

Are you sharing ideas with other folks who do the same job you do?

I think I would love to see more collaboration. In Vermont, in a lot of ways we were bracing for the situation that we’ve heard reported from in New York or in Massachusetts or New Jersey, where we were all going to be super overwhelmed as funeral directors. But it really did focus on the logistics and having conversations about this type of thing has been a little harder.

We’re not overwhelmed with work, but death goes on the same way that life goes on. So we’re all very busy, and we also are not able to have sort of our annual meetings. There hasn’t been a chance for funeral directors to come together and kind of organically have these conversations. So I would love to see this conversation become a broader, more statewide conversation.

More from VPR: End-Of-Life Wishes In A Pandemic

And I think it’s what you said earlier: a lot of this is very relevant, whether we’re in a pandemic or not. We’re more spread out now in terms of where we live. People can’t always come back for the funeral. People can’t take time off work. So I don’t think these ideas are ever going to lose their relevance going forward.

You know, right now, it might look a little weird to have something in the obituary – it’s not standard to have an ask in an obituary that says, “Hey, you know, at 3 o’clock on Tuesday afternoon, will you play this Tom Petty song? Because it was their favorite song.” That’s not generally something that you see. But I think that it’s great. It’s pretty easy for everyone to do.

And so against just normalize seeing things like that in obituaries will help us as we continue to navigate how this is going to look, and how funerals will be shaped coming forward and coming out of this.

 

Grieving and Caring during COVID-19

My last post came from a place of deep sorrow as I tried to understand how I could support families who were grieving during this time of social distancing, mass illness, and profound change.

Thanks in part to many of the responses and interviews I did in the wake of that post I found myself feeling inspired to help craft creative and compassionate new ways for families to find ways to grieve, get support, design services, and limit service sizes, as well as tips for people supporting people who are currently grieving the death of a loved one. I drew from Dr. Alan Wolfelt’s The Six Needs of Mourning, past mourning traditions, and conversations with families. I’m please to share those ideas here and hope that they may be of use others.

1. For Grieving Families

2. Designing a Graveside Service

3. Limiting Gathering Size

4. Supporting Someone who is Grieving

1. Grieving During the Pandemic

Because of the gathering restrictions in place due to the COVID-19 pandemic mourning the death of a loved one is especially difficult at this time because we can’t engage in familiar traditions such as funerals and receptions. I hope these ideas help you feel connected and supported by your community as you grieve during this time of social distancing.

One of the wonderful things that happens at funerals and receptions is the chance to meet other people who loved your loved one- people you might not even know- and hear their stories. Thanks to technology sharing stories in groups is something that can still happen.

If you are not comfortable with technology, or do not have internet service, an obituary can be a great way to ask your community to come together to support you, or to be in touch in old-fashioned ways- such as letters.

Mention an activity or wish in the obituary to be done together at a designated time. People can send photos and notes about their experience afterwards. Here a just a few ideas:

  • A favorite song, poem, movie, TV show to be listened to/read/watched
  • Lighting a candle
  • A dedicated moment of silence
  • A time to say a prayer or meditation
  • A color that can be worn on a set day or used to decorate a space indoors or out
  • A routine such a morning cup of coffee, watching the sunset, taking a walk
  • A favorite meal that people can make and eat on a set day

Or ask your community to do something over a longer period of time such as:

  • Hang/place something in a street facing window- perhaps a sign with a favorite memory, saying or poem; a specific color, or even just your loved one’s name so that when you walk around your community you can see who is supporting and thinking of you.
  • Place a basket on your steps and ask for people to leave memories, cards, photos, flowers, or condolences. Ask people to leave live plants you can use them in a memorial garden.

Things to organize in the community:

  • A drive-by wake: People can meet at a certain time at a designated spot and then drive past the home. Encourage people to make signs and/ or bring battery-powered/electric candles for the family to see.
  • A Facebook page for people to share stories, pictures of themselves participating in the activity, and stay in touch 

Things you can do to signal that you have lost someone:

  • Place a candle in your window with your loved one’s name and objects that are symbolic to their life
  • Hang a black wreath with your loved one’s name on your door

Signaling to your neighborhood that you are mourning is one way for them to know you might be in need of extra support or even just good wishes. If you’d like, you can even organize a way for them to respond, such as asking for cards.

2. Designing a Graveside Service

During the COVID-19 pandemic the most common funeral option has been a graveside service with plans for a memorial church service or celebration of life at a later date. While some religions offer a short committal service, you may wish to add elements of your own to the ceremony. I hope these tips help you think about crafting a unique service to honor the life of your loved one.

Simple is beautiful. Nothing needs to be extravagant and service time should be approximately 30-45 minutes.

Consider:

Who will you be inviting, what do they have to offer- do they sing, write poetry, speak well in public? With only a few people in attendance, use the talents of the guests to design something unique and meaningful. 

What elements of your loved one’s life do you want to honor and celebrate at the graveside? 

Asking those attending to dress in your loved one’s favorite color, or sports team jerseys/hats.

Discussing with loved one which readings and songs they feel are meaningful to the life of your loved one- you might learn of something new and it is a great way to include people who can’t be physically present

Asking the people attending to share (short) stories of how they knew your loved one at the graveside. Have them include how they will carry the memory of your loved one in their life moving forward. You can also ask people who can’t attend to write a 1-2 minute story that can be read.

Prior to the service, asking people to write down a wish or memory that can be placed in the grave with the casket- these can come even from people who can physically be there and even read aloud before being placed.

Find a way to include people who cannot be there so that everyone feels as though they are able to honor your loved one and support you:

  • Live-stream or record the service.
  • Ask everyone to them wear a favorite color/sports team of your loved one’s.
  • Start the service with a moment of silence everyone can observe at that specific time.
  • Place flowers for people who would otherwise be there on the casket and state who each flower is from.
  • Bring a small object (like river stones) that can be present at the ceremony and the given to everyone who attended and distributed to those who can’t attend. If your loved one collected items (such as teaspoons or other knick-knacks) and you are comfortable sharing those, that would add a lovely personal touch.
  • Create a book of with what was read and said and share it

If you simply cannot limit the number of people who want to attend consider organizing a car parade. People can decorate their cars in honor of your loved one and drive past the gravesite before returning to their homes. If you choose this option please remind people that they must stay in their cars.

FOR GREEN BURIALS

At a green burial the people present can participate in symbolically, or entirely, closing the grave. If this is the case please ask everyone to wear gloves- gardening gloves are ok- and be aware that the shovel handle will be disinfected between uses.

If the cemetery allows planting at the gravesite ask guests to bring an appropriate plant (each cemetery will have its own guidelines but a good rule of thumb is that it should be native and should be a pollinator) and a small shovel. Each guest can take a turn planting their plant.

 

3. Small Gatherings

 At a funeral or graveside service one of the most important things people gather to do is to honor and celebrate the life of the person who has died.  It is only natural to want to include all the people whose lives have been touched by your loved one in the ceremony and invite them to witness the burial.  However, to keep each other safe during the COVID-19 pandemic that is not physically possible.

Many of the families I have spoken to us about the challenges of having to choose only a few people who can be present at the funeral or graveside service. What is unexpected is how rewarding they have noticed the small ceremony being.

There are many different ways to approach thinking about how to limit who you invite. It may be immediate family, or people who are local. The key shared with me by families is to approach the decision with intention and compassion.

Consider:

Who will most benefit from being physically present?

How do the people you invite represent aspects of your loved one’s life?

Who are the people who can come together and support you and each other?

What type of graveside ceremony do you want to have and what roles will the guests play? (See Designing a Graveside Service for more ideas about this as well as how to include people who won’t be physically present)

IF you live in Vermont, things to keep in mind:

Per The Vermont Department of Health, people who travel to Vermont must self-isolate for 14 days prior to interacting with community.

Social distancing regulations mean that groups that have been in isolation together may stand together, those that have not must maintain at least 6 feet of distance between them.

If you are planning on live-streaming a service, internet connections can vary widely so you may need to record the ceremony instead. 

If you simply cannot limit the number of people who want to attend consider organizing a car parade. People can decorate their cars in honor of your loved one and drive past the gravesite before returning to their homes. If you choose this option please remind people that they must stay in their cars.

4. Supporting a Grieving Person

Because of the gathering restrictions in place due to the COVID-19 pandemic supporting someone who is mourning the death of a loved one can feel especially difficult.

One thing we can do for people who are grieving is to see and be present for their grief and be supported in their mourning. I encourage you to reach out and share your stories of the person who has died with their loved ones. It is a wonderful way to honor the life they lived and acknowledge how hard it must be for the family to be without them.

In the face of grief, it is hard to know the right thing to say or do but it is ok to admit that. The worst thing you can do is not say or do anything at all. 

Reach out!

  • Send an email or card.
  • Make a concrete offer to help
    • Offer to drop easily frozen meals off at a specific day/time
    • Offer to go to the grocery store and leave groceries on the steps
    • Offer to make a trip to the Laundromat or Post Office
    • Offer to help with garden and yard work
    • Offer to organize an online memorial page or another way to collect stories, memories, and photographs that can be shared
  • Leave a book, magazine, puzzle, or Netflix idea in the mailbox
  • Send flowers or a plant. If you know a favorite color or object ask the florist to incorporate it. Try and support your local florist when you do.

Get creative with your friends and neighbors

  • Organize a drive-by parade at a time when you know the family will be home
  • Put candles in the windows of nearby houses along with the name and/or things that symbolize the person who has died
  • Have a socially distanced picinic in the neighborhood where people can gather on their own lawns but share food, drink, and memories. Perhaps all while wearing a favorite color/sports team of the person who has died
  • Create a shared calendar to make sure that the people who are grieving are getting the support they need over the days, weeks, and months when a kind phone call or offer to run an errand can really make a difference
  • Collect stories, memories, and photos of the person who has died and make a physical or virtual memory book to share

Recognize that you may be grieving too

When someone dies, it isn’t just their family and loved ones who grieve- their loss ripples throughout their community. Reaching out to support the family is one way to address the loss you are feeling.

On Mediating Grief During The COVID-19 Pandemic

I haven’t had a chance to write about why I chose to become a funeral director in 2019. Or, how it has felt to do the work as an apprentice, which I started in July of 2019. Or fully licensed, which I am as of December 2019. Or my (mixed) feelings about mortuary school and studying for my embalmer’s license, which I hope to earn in December 2020.

But now a pandemic has come and I am a funeral director. Below is a guest post I wrote about my experiences here in Vermont that was first posted on the blog for  The Institute For The Study of Birth, Breath, and Death

~

“More than a funeral service: meditating grief during COVID-19″

Although I am not a medical professional, I am on a different front line of the COVID-19 crisis: as a funeral director, my role is caring for those who die and supporting their families. I write from my heart, sharing my direct experiences, questions, concerns, fears, and hopes. I speak for my own experience and hope that my words bring insight to all called to serve the dying and the dead at this time. 

One of the things I am struggling with is that there simply are no clear directives. We have a stay at home order, and yet we also have guidelines for gatherings (in VT 10 people maximum). Does that mean a gathering of essential workers or gatherings for essential work? We have been explicitly told by the Health Department that funerals are non-essential gatherings, and yet an amendment to to the stay-at-home order made on 3/28/20 said that funeral directors could continue to conduct face-to-face meetings. Is this only for funeral business (contracts for services) or for small gatherings?
Logically, if people are already leaving home to enter the funeral home for business why not also offer them a limited family viewing? And, if we do that can they be allowed to touch the body? Each other? Then, from the public health perspective, we should all stay home, even essential workers, except for essential work. In many ways the only essential work of a funeral director is body removal and disposition. My boss would certainly argue that the essential part also includes getting paid for our services. And, in my heart the most essential work is allowing families a chance to say goodbye.
There is simply no way to compare the heart work of mediating grief through final goodbye and ritual, with the necessary public health work of containing a pandemic through isolation, with the need in a Capitalist system to make money for services. I am conflicted because there is a right answer for every possible perspective I can think of and no answer to fit the needs of the whole individuals I serve.
All I know is that is is physically difficult to breathe under the weight of supporting families navigating this.

In a time when protective gear is both expensive and scarce, and their necessity is met by disbelief from many others in my own field, I have done what I can to prepare the necessary physical resources to safely handle the bodies of those that die to limit any risk of transmission in the immediate aftermath of a death from COVID-19, as well as to protect myself and my coworkers from transmission from the families and staff we meet when we come to take the body.

I have been thinking about how to best have the sensitive discussions with families who will witness the bodies of their loved ones placed in body bags. This is a practice I avoid under normal circumstances because it can be distressing to families as it feels as though the body they so dearly loved is now a dangerous object. Even families whose loved ones do not die with any symptoms of respiratory distress will most likely see me wearing a mask and I can’t help but wonder, “how can I have sensitive conversations when half my face is obscured?”

And so, I also find myself on the front lines of mediating how people interact with their dead and with each other in times of grief.

Because of the risks large gatherings pose for transmission, even people whose loved ones die of something other than COVID-19, there are many restrictions/recommendations against the regular comforting gathering rituals that are so crucial in times of grief. While each state is different, in Vermont where I practice, funerals have been deemed “non-essential” gatherings- and most cannot take place with even a limited number people physically present. I believe that seeing and saying goodbye to the body of a loved one is an essential part of mourning. But now I am the gatekeeper of that ritual, put in the position of having to deny it.

We have so few common rituals in US American culture- perhaps as few as high school graduation, weddings, and funerals. And all have been suspended due to the pandemic because all involve gathering, all involve touch, and all—for different reasons—involve tears.

Commingling the mucus that comes with crying is thought to be an excellent transmission pathway. If I followed the spirit of the guidelines for gatherings,  families would only be able to say goodbye over video links and not be allowed a final personal goodbye at all. In the rare circumstances where people might be allowed gather in the presence of the body of one who has died, I must discourage them from touching the body. The dead themselves pose little risk, but their bodies become a surface where virus can be transmitted. In the rare circumstances where people are able to interact with the body, best practice dictates that I must limit them to doing so one at a time and must disinfect the body between visitors. I must remind grieving people that social distancing means staying at least 6 feet apart even when they are crying and in most need of the comfort of touch.

In order to protect myself and my community, I must ask these difficult things of families without the use of touch myself, which often communicates so much more empathy than any words.

I know our mourning customs must change to protect our communities and it falls, in part, to funeral directors to help families find healthy ways to mourn with respect for social distancing. And yet, I do not feel as though I have the support of other funeral directors in navigating how to have these conversations with compassion and humility. At the moment I am still struggling with finding ways to allow families, in limited numbers, to continue to have the chance to say goodbye to their dead even though there are risks. My background as a scientist tells me that my many, many colleagues who have suspended all but the business of funeral service—signing contracts for services, and even doing that over email or through car windows—are not wrong to do so.

In order to contain COVID-19, flatten the curve, and try and hopefully decrease the overall number of deaths, we are better off the more isolated we are. And yet, and yet, to deny families the chance to say goodbye to their loved ones seems such a direct denial of their humanity. To have only extremely limited contact with families even in the wake of death when they most count on funeral directors to support them seems like a failure in my work. Families are suffering because of these difficult restrictions on their expected normal mourning routines. To many this pandemic does not seem real, or far less real than the immediate death they are grieving. The fact that these restrictions are in place to protect them and their community makes mediating any sort of discussion feel patronizing.

I do not know what the right way forward is.

As a funeral director, I remain on call 24/7 for all deaths. Deaths from causes other than COVID-19 are also increasing as access to medical care becomes difficult and/or scary. I must work.

I work for my community whenever and however death arrives. I work at the bequests of families; of hospices, nursing home and long-term care facilities; and of the police, State’s Attorney, and the State Medical Examiner. I travel into nursing homes and hospitals, homes, and any place a dead body needs to be removed. I do so with dignity and respect for the body I am there to care for and now also do so at the risk of exposure to COVID-19. Funeral directors are the people often forgotten because no one wants to think about death. And yet, we are there for everyone who dies regardless of cause of death, race, sexual orientation, creed, economic status, or anything else that made them a unique human.

I work in death. It is my calling and my chosen field. But that does not give me mental super-powers to withstand the sadness of my work. I stand on the ever-changing ground of what I can offer families as I wait for the death toll from COVID-19 to spike in Vermont and I find myself scared and worried I will not have the emotional strength to do what I must do.

I recharge through my connection with families and it is very daunting to see the way I interact with families change so radically right as I face the time when COVID-19 deaths are expected to rise, and while other deaths continue to impact families. I might work with some families and never meet them face to face, knowing them only through the body of one they loved, a voice on the phone, or words on a screen. And yet I know I will do it.

I will not fail my community or falter in my work. My first responsibility is to the dead and those that love them, but I will do all I can to serve my community safely. Even when how I will continue to treat every family I serve with compassion and respect, and the bodies of those they love with dignity and care, has become less clear.

I have been called upon to serve my community in their time of grief and will continue to do so in this time of crisis, and in the time when the crisis has passed. Death, like life, goes on.

~

I’ll also be doing a live interview with The Institute’s founder, Amy Glenn, this Tuesday: March 31st at 7pm EST.  If you’d like to listen you can make a one time donation of what ever you can. If you are inspired to join the Institute, mentioning my name along with a donation of $30 will grant you lifetime membership to the Institute (a discount from the current discounted $130 rate!).

To make a donation or join please email Amy.

6 things I am doing to help build death informed communities

(Did you know I am currently pursuing a degree and career as a funeral director? Keep an eye out for some posts about that in the near future!)

Focusing on community building is one of the most important things you can do to prepare for your own good death. Here are six things I am doing to build a death-informed community in Vermont and beyond:

1. Talking about death and asking you to do the same.

Talk about death, talk about dying, talk about your thoughts and feelings, hopes and fears, any questions you have when you think about the end of life. Explore how death relates to other transitions in your life- like changing careers- and how these can offer a chance for us to practice what we need for dying. You can find me doing just that at most Thursday night meeting of the Montpelier Death Cafe. You can learn more about Death Cafe at DeathCafe.com The Montpelier Death Cafe meets on the 2nd Friday and 3rd Thursday of each month. To learn more email the Montpelier Death Cafe

2. Planning for death.

By now most people have heard of advance directives and how they allow you to plan for your own death. In Vermont, the Vermont Ethics Network (VEN) an advance directive form and resources that includes medical, personal, and social decisions you should consider. It is often helpful to work directly with someone to complete an Advance Directive that is reflective of your values for living well includes plans for after you die. Coming into relationship with your own mortality is a necessary step before you can plan for your own death. If you want support for values-based end of life planning explore what VEN offers, or email me to help you find someone.

3. Promoting different models of end of life support.

End of Life Doulas now exist to serve as a non-medical compliment to hospice care. There are many definitions and training programs for End of Life Doulas. Make sure the person you find is comfortable with the “core competencies” defined by the National End of Life Doula Alliance (NEDA) so that you not only find someone who is the best fit for you, but can be confident that they will help support you in the best way for you. Birth and Bereavement Doulas are specially trained to support families through the loss of pregnancy. The Institute for Birth, Breath, and Death is an excellent source of doulas trained to support families at any stage of pregnancy, loss for any reason, and the difficulty of saying goodbye before you have had a chance to say hello.

4. Challenging the concept of “good death.”

Many people talk about a good death. But what does that mean? An important question to ask is “a good death for whom?” The Collective for Radical Death Studies is a group of scholars, death work practitioners, activists and students who view death work as synonymous with anti-racism work, and are actively working toward dismantling oppression as a way to validate cultural and social life among marginalized groups. I am honored to be a founding member of this group and contributing to its work to decolonize death practices. I have always believed we define our own good death, now I am working to make that accessible to all.

5. Remembering the environment.

In a time of climate crisis it is easy to overlook that something as simple as our disposition choices can have a positive impact on the environment in addition to contribution healthy social and emotional mourning. At Green Burial Vermont we strive to educate Vermont individuals, communities, and cemeteries about socially and environmentally responsible burial practices. If you’re considering cremation, or the mushroom suit, be sure to visit our website or email Green Burial Vermont and schedule a by-donation workshop for community- often given by members of your community- and learn how you can play a role in making green burial an accessible option for all Vermonters.

6. Writing.

Here my blog “Your Own Good Death.” I reflect on working with death, share some of my experiences, review books I’ve read, talk about my journey and what I am learning about how I want to live and die. I don’t write as often as I would like so please subscribe to make sure you never miss a post. I encourage you to write to- whether for yourself, on a blog, or for a publication writing helps us better understand and share our own experiences.

This Winter I got to talk about Green Burial on VPR

Listen, read, and see pictures here

There are so many benefits to green burial, by returning the body to the earth you are providing the soil with essential nutrients it needs to be healthy, you are limiting using practices that negatively impact the environment and you are actively participating in a ritual in service of the body of your dead loved one- something that has been shown in clinical studies to reduce the possibility of prolonged and/or complicated grief.

But there is also the bigger picture of conserving, creating, and protecting habitat. Cemeteries (at least those for white people) have long been considered to be sacred ground, and protected from development. Even as the definition of sacred moves from religious to secular, the benefits of combining conservation and rewilding efforts with natural burial grounds is substantial.

On January 17th, I talked with Jane Lindholm of VPR about Spirit Sanctuary a private, conservation-style cemetery in the Split Rock Wildway in Essex, NY which offers enrollees the opportunity to make a bequest to one of their conservation partners, allowing members a significantly reduced cost of burial. By asking enrollees to do with their money for the conservation groups that steward the land what their bodies will do for the health of the land itself, Spirit Sanctuary has created a unique approach conservation through burial.

The Split Rock Wildway connects the rich valleys along the western edge of Lake Champlain to the High Peaks of the central Adirondacks. This wildlife
corridor is considered highly resilient according to The Nature
Conservancy’s Resilient Land Mapping tool, and therefore a high
priority for targeted conservation efforts in an era of climate
uncertainty. The land is protected for conservation in perpetuity by
the Eddy Foundation, a private family foundation whose highest
priority is protecting linkages in critical wildlife corridors. Read this amazing article (including fantastic drone footage) to find out more about Spirit Sanctuary.

Assisted Living is Often the Best Choice- That Might Indicate a Problem.

Recently an older family member of mine had a health crisis and decided they could no longer live independently. In their words “the work of daily living” (cooking, managing medication, doctors visits, and errands) was just too much for them to do any of the things they actually enjoyed about living (socializing, going for walks, reading). So, they chose to give up their apartment and move to an assisted living facility.

I have no doubt that this was the best choice for them. But, I also have no doubt that that fact is an indicator of a bigger problem- our society is not equipped for helping people age at home. We’re not even talking about the challenges independent living brings to people as the age.

These past two months have taught me that we as a society need to confront the myth that it’s easily possible for people to die at home. If for no other reason than it’s nearly impossible for people to age at home.

There is an unnavigable gap between when aging people start to need extra help and imminent dying.

1. To be eligible for hospice a doctor must feel its reasonable to expect a person to die within the next 6 months. (And, even then hospice itself is not enough for any person to die at home).

2. There are few to no support programs for help with aging before a person is eligible for Hospice.

3. Most palliative care programs require an acute diagnosis. “Getting old” doesn’t count.

4. As people become more and more dependent on their care-giving community, members of those communities most balance their ability to be there with managing their own lives, the lack of paid leave from work, and the knowledge that once death is imminent they’ll be even more needed.

5. As the tasks of daily living become overwhelming aging people must take on the additional burden of coordinating their care, including any home support services via private pay or medicare, food delivery, medication delivery, and housekeeping. All these things are designed to help people stay independent, but the reality is they are exhausting and often expensive to organize.

I’ve said before that a #DeathPositive Movement (normalizing talking about dying and designing how to meet the needs of the dying) should be concurrent with a #AgingPositive Movement (normalizing talking about aging and designing how to meet the needs of the aging).

The #SilverTsumani is almost upon us, when 65 million people in the United States will be over the age of 65. We’re talking about being ready to support them as they die. When will we start talking about how to support them as the age?

 

 

 

Looking forward as a Death Doula: A summary of what I wanted to share at the UVM EOL Doula Program Grad Gathering

(As many of you know I was unable to attend the UVM End of Life Doula Grad Weekend because of a family health crisis and didn’t get a chance to speak on the panel that was to address “The Direction of Doula Work.” As this is not unique to graduates of the UVM Program, I want to share some of my thoughts here.)

Most people I interact with who have completed a Death Doula training reach out to me because they want to know the next steps to actually becoming a Death Doula. While my advice will always, always, include become a hospice volunteer in order to practice your skills and bear witness to the dying, I’d like to dive a little deeper into why becoming a Death Doula may be difficult.

Death Doulas are part of a movement to reclaim death from the medicalized event it has become. That doesn’t, however, mean that Death Doulas need to be a new profession in death work. I believe that a great way to be a Death Doula is to find out what our individual communities need us to be as death doulas.

Having just spent nearly a week in one of the best hospitals in the world I can tell you that there is a need for people with familiarity with hospitals and Death Doula skills to be patient advocates. ESPECIALLY as people navigate the time just before hospice and are making medical decisions that slow down and eventually stop aggressive treatment.

But notice that I said that this is a need for “people with familiarity with hospitals and Death Doula skills.” Becoming a Death Doula doesn’t need to be a career pivot. In finding out what your community needs you can always check back in with yourself and your skills from your previous career and life to see what unique Death Doula solution you can bring to meet the need.

As more people answer the call to become a Death Doula we will have more and more Death Doulas practicing in proximity to each other. Which does raise important questions about how Death Doulas can work together without competing. This comes back to every Death Doula having a unique skillset and finding ways to honor that in each other’s work.

Not everyone interested in being a Death Doula is interested in charging for their services, but for those who are there are several things to consider- especially with other doulas practicing in our communities. How do you decide the value of your work? How do you make sure the value of your work does not undervalue someone else’s? What are our ethical obligations as doulas to “put ourselves out of business” by returning certain skills, such a being present with the dying, back to the community and what skills should remain skills it is ethical to charge for?

What existing care models do we look to to determine the structure of our work and how we are reimbursed for it? Although we share “doula” with birth doulas our work is too different to offer much as a model. Lately I’ve been looking at Physical Therapy as a model because of the way it offers special skills in a time of acute need while at the same time teaching skills to the patient to care for themselves.

Lastly, I believe there is the need for Death Doulas to be advocates for the work we do. In our circles we know we exist and we know we offer something of value. With the creation of the NHPCO End Of Life Doula Council we may find much needed forward momentum in integrating Death Doulas into hospice care models, but we need similar momentum in hospitals, doctors’ offices, skilled nursing facilities, and senior centers. We need to become an integrated part of of any institution that supports the dying and we need the help of people who want our services to do so.

As a Death Doula you are at the forefront of a new movement. As your get started be sure to introduce yourself to both the medical institutions and the people in your community. Hold workshops so people know who you are and what you offer. Not only will this be a great way for your community to learn about you- but it will be an excellent way to learn what your community needs from you.

Dumping out my doula-bag: How to be family instead of an End of Life Doula

Recently, I have begun to learn the fine balance of what it means to be of an end of life doula to a family member who really doesn’t want me to serve as her end of life doula.

So, I am holding space for my family member exactly where she is, without trying to offer solutions to problems she hasn’t yet identified. To be present with an open heart and open mind, without opening my (metaphorical) doula-bag. To stay in the moment, without thinking through the logistics of what most likely comes next.

And it’s hard.

When I work with strangers I am a compassionately neutral. Although I come to care deeply for everyone I work with, my investment is completely in them. I am present without an agenda, without solutions, without prognostics. When asked, I offer my metaphorical tools and knowledge only in order to allow them to make the best decision for themselves. This is my service to them.

What I find working with my family member is that she doesn’t want that service AND I have so much invested in my relationship with her that I am not neutral. In fact, there is a best for me in addition to what is best for her.

Learning to center someone I love deeply is challenging because it means finding different ways to make space for myself and my needs within our relationship to each other.

Just as Susan Silk describes in her “Ring Theory” my best for me in the situation needs to be dumped out.
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Why? Because it is what is best for me. All my experiences working in end of life mean I see and am aware of things that the family and friends in my circle of support aren’t asking for yet. This awareness is where I am, but unless I dump it out I can’t meet them where they are, I can’t be present, I can’t stay in the moment- I can’t allow my family member to discover what is best for her.

Never before have I been so grateful to my end of life doula colleagues who have been so present for me as this situation unfolds. In allowing me to “dump out” my doula bag, and my heart, they have created a space where I can take care of my own needs around my best for me so that I can turn back to my family member with an open heart. I can be completely present as myself, just like she wants.