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?

 

 

 

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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.

 

Are you a UVM End Of Life Doula Program Grad? We can meet at their “Doula Gathering” October 20-21st

A quick post to say that I will be at the UVM End of Life Doula Program “Grad Mingle” from 5:00-6:30pm in Burlington, VT on October 20th AND participating on the panel  “The Direction of Doula Work” on Sunday, October 21st from 9:30-11:30am. Both programs are ticketed so be sure to register if you want to attend. (You do not have to attend the workshop on Saturday afternoon to be able to attend either event I will be at.)

I would love to meet you and am excited for this opportunity! I will do my best to be available during the mingle and after the panel. As always, I am happy to hear from you at any time- just email me: michelle@ending-well.com

This gathering is ONLY for graduates of the UVM EOL Doula Program. If for some reason you are a grad and don’t have the details you can learn more here

Dear Little: “Do Living Things Breathe and Blink?” — from “Letters To Little”

Hey, Little. Last week was a week of death, dying, coping, and learning for you. It was a rough week and you handled it like a champ. Better than most adults. It started with the bird. Captain and I found a small bird, sparrow, that was suffering from HBC (hit by car) related injuries in […]

via Dear Little: “Do Living Things Breathe and Blink?” — Letters To Little

“Letters to Little” is a parenting/life blog written by my dog’s favorite human (she’s one one of mine too).  This post so perfectly captures how to let a young child engage with death that I should had to share it here.

The idea of letting your child take the lead when the encounter death can run against every parental instinct to shield and protect something from so sad an so finite. But it is also so inevitable. We can not make a world for our children where death does not exist. But we can give them courage to explore this world of our in their own way. In doing so they let us know what they need- space to cry, extra cuddles, honest (age appropriate) answers- this is something we can give children and in doing so we give them the gift of knowing that they are resilient, and let them build the first tools they will use when the experience grief over and over again.

Thanks to M3 and Little for letting me share their story here.

Oh, and if you’re wondering about great books to introduce kids to death I keep a running list on my Goodreads, but this story in particular reminds me of ” The Dead Bird” by Margaret Wise Brown (author of Goodnight Moon and Runaway Bunny).

On the Death by Design Podcast

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

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

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

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

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

Acronym Soup for the EOLDoula Movement’s Soul

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

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

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

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

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

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

What a great time to be an EOL Doula!

Doula: Old and New

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

Featured in The New York Times!!!

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

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