Redesigning the End

"There's a psychological block going on here because the death word is hanging around our head. And that deranges us and shuts our rationality off and opens up our emotions. So we think we're thinking, but we're not, we're just feeling."

Joshua Slocum

Executive Director, Funeral Consumers Alliance

I'm excited for you to meet Joshua Slocum, the Executive Director of the Funeral Consumers Alliance (FCA), a nonprofit dedicated to education and advocacy surrounding funeral consumer rights. The Funeral Consumers Alliance exists to help people make good decisions about funerals and the tools on their website are there for you when you need them.

This episode highlights some of my conversation with Josh. Below is a transcript of the conversation with even more great information about how to buy a funeral.

Thanks as always to Pat Cupples and Hotels & Highways for the use of your original music. Photo: from the movie "The Big Lebowski"

Free Course: "How to Host a Virtual Funeral"

FULL TRANSCRIPT (Recorded on 2/22/22)

Joshua Slocum, Funeral Consumers Alliance

Brian Hayden, Redesigning the End

Joshua: I'm Josh Slocum, I'm executive director of Funeral Consumers Alliance.

We're a nonprofit - think of us like we were the consumer reports of funerals. So we try to help people understand what their options are, what their legal rights. And how to plan a funeral. And I use that term expansively means anything that can be done with the dead body. So it could mean cremation only.

It could mean body donation. When I use the term funeral, help people plan and arrangement a funeral that meets their emotional needs, but also meet their budget. Because money is one of the biggest factors that causes people dissatisfaction and funerals. And I got into the work because I used to be a newspaper reporter.

And I did some research on the funeral industry a couple of decades ago for a feature story. And, and what I uncovered was so disturbing to me in terms of how consumers were mistreated and how much collusion there was between state regulators and industry lobbying bodies that. you know, I got in contact with this organization, funeral consumers Alliance, and that turned into a job.

So that's how I got here.

Brian: Great. Why does the Funeral Consumers Alliance exists? What's the role that your organization plays and, and who do you serve?

Joshua: We serve the general public. Anyone who wants information, needs information on how to plan a funeral affordably.

That's what we're here for. We try to act as a voice for consumers in public policy discussions might be legislation might be regulations that affect the well-being of grieving people in the funeral, transaction, buying cemetery, property buying funeral. Because consumers need a voice in that arena as well.

And there are already industry trade associations that speak for funeral directors. So we try to speak for consumers. So an example of big picture stuff that we do, our organization was heavily involved, many decades ago in helping get passed. What's called the funeral rule, which is a set of regulations that federal trade commission that give consumers specific rights when arranging a funeral.

And today we are pressuring the Federal Trade Commission to strengthen the rule, to bring it into the 21st century. So for example, the funeral rule requires funeral homes to hand people, paper priceless so that they can see what they're buying. First. We want the FTC to require those price lists to be published online, to meet shoppers, where they shop and the way they shop in 2022.

Brian: So how should I shop for a funeral?

Joshua: Well, let me take it two ways. Let me, let me give you two scenarios here. I'm going to give you the, the,

PACE: Program for All-Inclusive Care for the Elderly

"This [PACE] is what kind of program I want to work in. This is what is needed."

Sonja Felton

Executive Director, Huron Valley PACE

This is an episode about a program that helps caregivers. I recently learned about a program that more people should know about. It’s called PACE: Program for All Inclusicve Care for the Elderly.

PACE (Program of All-Inclusive Care for the Elderly) is a unique health plan and care provider, committed to keeping aging adults with challenging healthcare conditions in their home, by caring for their medical, physical and social needs. Caregivers describe PACE as a massive relief - 97% who use it recommend it to others. 

People I interviewed about PACE love PACE. It reminds me of the way people talk about hospice. They love it and are so grateful to have found the program. In both cases I think what they love is the coordination of care. The fact that everyone communicates and it isn’t the caregivers job to be the lonely hub of communication for everything.

The typical PACE participant is similar to the average nursing home resident. The typical participant is an 80-year-old woman with eight medical conditions and limitations in three activities of daily living. Nearly half (49 percent) of PACE participants have been diagnosed with dementia. Despite a high level of care needs, more than 90 percent of PACE participants are able to continue to live in their community.

https://www.npaonline.org/policy-advocacy/value-pace

Free Course: "Estate Planning for Aging Parents"

Cindy Pierce: Author, Storyteller, Inn-Keeper, Caregiver

"Everyone talks a big game about aging in place. I love the idea, but why it worked for previous generations is because usually the mom was not working and at home taking care of kids. And then the kids could take care of themselves, so she took care of the aging parent. We're both working. Our kids are off doing all sorts of things - like, we're not around at home."

Cindy Pierce

Cindy Pierce is the funniest person I know. In this podcast episode about caregiving and PACE, Cindy tells a really funny story about her time caring for her mom. I love Cindy because she uses humor to talk about the hardest topics. 

Cindy Pierce is a social sexuality educator, storyteller and author of Sexploitation: Helping Kids Develop Healthy Sexuality in a Porn-Driven World and Sex, College and Social Media: A Commonsense Guide to Navigating the Hookup Culture.

Combining comic storytelling and years of research, she engages audiences with her message about making healthy choices and navigating cultural pressures. Cindy encourages educators to engage in conversations with students about the influences of social media, Internet porn and hookup culture. Young people are struggling more than ever to feel at ease, worthy and relevant as they attempt to find balance with all realms of their busy lives.

Cindy and her husband, Bruce Lingelbach have three young adults and run Pierce’s Inn in Etna, N.H.

Credits and Thank You

Thank you to Sonja Felton from Huron Valley PACE, Robert Greenwood from The National PACE Association, and Stephanie Winslow from the PACE Association of Michigan.

Thank you to Pat Cupples and Hotels and Highways for your original music.

Thank you to Cindy Pierce for sharing stories about the time she spent as a caregiver.

Photo: Ricardo Gomez Angel on Unsplash

“To live in hearts we leave behind is not to die.”

Thomas Campbell

19th century Scottish poet

How Do You Want to be Remembered?

This past week was the 20th anniversary of the September 11th terrorist attacks. And when we talk about September 11th, the thing we always say is how important it is to remember. How we should never forget.

I certainly haven’t forgotten. I’ve shared a lot of memories with my kids - who weren’t alive at the time - to help them understand what happened. 

And this week I’ve been wondering - WHY is it so important to remember? What exactly is the purpose of remembering? How much remembering is the right amount? And is there a right way to remember?

The word legacy first appeared in English in the late 14th century and referred mostly to an 'ambassador' who would distribute property as laid out in a will. Over time the meaning shifted to refer to the 'property left in a will'. 

The meaning of legacy evolved again over the next few centuries to include the memories of a person. Thomas Campbell the 19th century Scottish Poet, said: “To live in hearts we leave behind is not to die.” The idea that we can live on through the memories of our loved ones is actually relatively new. It’s a beautiful idea at the heart of Mexican holiday, Dia de los Muertos and you can see it in many other cultures too.

The Pressure of Remembering

But if I’m really honest - remembering - and being remembered - feels like a lot of pressure. It’s pressure that I’m mostly putting on myself - to do memorable things - but also on my family...to document and remember me appropriately.

There aren’t any clear procedural guidelines. One part is just having conversations so the information passes from one brain to the next. To preserve it orally. But is talking about it enough?

You can write it down. There are services to do that if you aren’t inclined to become an author. Pictures are great. Though pictures that lack context can depreciate into garbage for future generations who don’t know the stories that go with them. Audio storytelling has a lot of potential and video might be the best way to fully capture the person as they were.

But what’s the difference between content and legacy? What are we optimizing for? How much remembering is enough remembering?

Rebecca Solnit On Legacy

Rebecca Solnit is an award-winning author. She’s written non-fiction books that required years of research and writing and editing. But the most popular thing she ever published is an essay called “Men Explain Things To Me” and it only took her a couple of hours to write. She wrote it effortlessly because it was based on a lifetime of experience and it spoke truth about how women are casually marginalized. Women recognized the truth immediately and it was a big influence on the #MeToo movement.

In her memoir she talks about legacy and why being remembered isn’t what actually matters. I want you to hear the whole passage because it totally changed how I think about my own legacy.

That's what this episode is about. It's a celebration of Solnit's ability to characterize legacy as something restorative and sustainable.

Episode Credits

Laura - my wife - read the passage from Rebecca Solnit's memoir. Pat Cupples provided original music for this episode. Additional music is from the band Hotels & Highways.

Photo credit: Jim Herrington via The New Republic

Speaking of soil...Check out the "Green Burial Masterclass"

Some of the most heartbreaking stories in 2020 were about families that couldn’t gather together to grieve the death of a loved one. Virtual funerals became a thing for the first time. I wanted to do this episode because I was hearing stories about virtual funerals that were surprisingly awesome.

"Sometimes in our healthcare experiences we just feel like numbers in an office, you know, running through, not getting enough time to say what we wanted to say or get our questions answered. And that's a symptom of healthcare not being human."

Lane Therrell FNP-BC, MSN, RN, HTCP

Clinical Education Director, mynurse.ai

Do you have a primary care doctor that you love? If you do, I’m jealous.

Sometimes I daydream about finding a great primary care doctor. He takes my insurance. It’s easy and casual to have an appointment so I go in for little stuff. Over the years he really gets to know me and after every visit I walk out feeling really dialed in on my health. He makes sure I’m getting all the tests I need and generally nudges me toward a healthier lifestyle.

In reality, I don’t even really know who my primary care doctor is. They keep leaving the health system, so I basically have the equivalent of a court-appointed public defender that I’ve been assigned and that’s the name that I put on forms. There’s no real relationship there.

My situation is pretty common.

The Association of American Medical Colleges put out a report in 2020 that says we’ll have a shortfall of 55,000 primare care doctors in the U.S. by 2033.

This episode is about a company that is trying to close the shortfall of primary care doctors with software. And I think what their approach makes a lot of sense.

About the Company: mynurse.ai

As Clinical Team Lead at Salusive Health, a telehealth startup, Lane Therrell combines her education and experience as a nurse practitioner with her skills as an educator and coach, to manage a team of wellness coaches who support the chronic care needs of Medicare patients between office visits.

mynurse.ai is digital health program helping seniors with chronic conditions live their best lives.

Episode Credits

Pat Cupples provided original music for this episode. Additional music is from the band Hotels & Highways.

Photo credit: mynurse.ai blog

Join us to learn more: "Medicare 2021: What Changed?"

"The average time to hire any sort of frontline healthcare worker - nationally - is 49 days. And that's by far the largest time to hire in any sort of macro industry in the United States."

Charles Turner

CEO, Kare (App)

Today we’re going to talk about Senior Housing - where do we live when we can’t really live by ourselves any more?

It’s a really big market: Americans spend about $688 billion on senior housing services. But for a lot of people this is a scary thing to navigate. It’s like the lint trap of the aging process - all the stuff you don’t want to talk or think about collect in this one knotted up ball of yarn.

In this episode I want to introduce you to a giant problem and one possible solution.

Let’s start with the problem:

US Nursing Home workers turned over at mean rate of 128% in 2017 and 2018. For context - restaurant workers turn over at 17% per year.

Can you even imagine trying to run a business when 128% of your workforce turns over every year? I can’t.

So what’s going on here?

Well there’s obvious stuff:

It’s a hard job.

You get paid hourly and schedules change week-to-week

You don’t get paid a lot - Caregivers in senior care facilities make $37,540. 

If you start researching the senior housing labor statistics it gets depressing fast. I don’t recommend doing this alone.

To help us understand what’s really going on and think about some positive solutions I want you to meet Charles Turner the founder and CEO of KARE.

About Charles Turner and Kare

An innovator in the senior housing space, Charles is currently the CEO of Kare, which is creating solutions to solve the labor shortage in senior care. Charles is also CEO of Invidia for Seniors, a multi platform company focused on improving the senior housing and care industry. Prior to Invidia, Charles was the President of Lifewell Senior Living and PinPoint Senior Living where he led development and operating initiatives for the companies. Invidia invests time, money and resources in technologies and programs that provide improve care and evidence based outcomes for its residents.

Charles holds a B.A. in History and Politics from Wake Forest University and an M.B.A. in Finance from The University of Texas in Austin.

Kare is a platform that empowers post acute caregivers to earn extra income and manage their own flexible schedules, while senior care communities decrease their operating costs by reducing high overtime wages and eliminating costly staffing agencies.

Episode Credits

Pat Cupples and Moby provided original music for this episode. 

Photo credit: StackSource

Join us to learn more: "Medicare 2021: What Changed?"

"Advance care planning is not enough. It's critically important that we develop highly reliable systems."

Dr. Stephanie Anderson

Respecting Choices®

Advance care planning - clarifying your wishes in advance about the kind of care you want to receive - improves outcomes for patients, families and healthcare providers. The data is so conclusive that legislation was passed in the 1990's to increase the number of Americans having an advance directive. The legislation failed, but it's a great start. In this conversation with Emily Lauri and Dr. Stephaie Anderson, we explore the problem and possible solutions.

Meet Dr. Stephanie Anderson

Dr. Stephanie Anderson is the executive director of Respecting Choices, a division of C-TAC Innovations. She is responsible for designing and leading strategy and operations including the delivery of this internationally recognized program. She has over 25 years of experience in palliative care, hospice, home care, case management, and emergency medicine. Dr. Anderson earned her doctor of nursing practice degree from the University of Iowa specializing in health systems administration.

Dr. Anderson has served in a variety of leadership roles. In these roles, her palliative care program was awarded Joint Commission Certification and the system received the Circle of Life award from the American Hospital Association. She co-chaired the Iowa Physician Orders for Scope of Treatment (IPOST) movement, resulting in new legislation and statewide implementation. Dr. Anderson joined Respecting Choices in 2013 as a senior faculty consultant and evolved into the director of consultation and education services prior to her current role. Dr. Anderson currently chairs the National POLST central region leaders group, co-chairs the POLST program assistance committee and a member of the program standards committee. She is vice president of Advance Care Planning - international. Dr. Anderson believes person-centered decision making based on an individual’s goals and values truly transforms care and should be the top priority to delivering exceptional whole-person healthcare.

Person-Centered Decision Making

Respecting Choices’ goal is to design a system of person-centered care that is guided by the best scientific evidence and is aligned with an individual’s goals and values.

This system requires a shared decision-making process that involves respectful interaction among providers, individuals, and families, and keeps the focus of planning on what matters most to each and every person for any healthcare decision.

Episode Credits

Pat Cupples provided original music for this episode. Additional music is from the band Hotels & Highways.

Photo credit: Gundersen Health System

Join us to learn more: "Medicare 2021: What Changed?"

" People are looking hungrily for anything that can give them a sense of efficacy in a world that doesn't seem to care what they think."

Walt Patrick

Herland Forest Natural Burial Cemetery

Green Burial basically means no embalming, no concrete vault, no coffin. It's how people did things for millennia, but today it represents just a tiny fraction of the overall market. Why?

Meet Walt Patrick

Walt is one of the founders of Herland Natural Burial Cemetery in Wahkaicus, WA. He's also the first licensed natural organic reduction operator in the country.

He's going to introduce you to green burial and make the case for why he's dedicated much of his life to making it available and affordable to anybody who likes it.

Green Burial

Green burial is less expensive and better for the environment than embalming or cremation. And it kind of flips the relationship you have with the body on it’s head.

This episode is not meant as a critique of funeral directors or decisions made by grieving family members or make anyone feel like they’ve done anything wrong. I don’t have an axe to grind, nobody is sponsoring the show - there’s no hidden agenda here.

Maybe it’s for you and maybe it’s not - but you should definitely spend a few minutes leaning what it it is.

Pat Cupples provided original music for this episode. Additional music is from the band Hotels & Highways.

Free Webinar: "Opportunities in Green Burial"

"The fact that our time on this earth is limited is actually the ultimate incentive to act."

Jeanne Proust

Meet Jeanne Proust. She's a philosopher and educator - in this thirteen minute piece she explains what philosophy says about death. These timeless ideas help us make sense of life, but don't address the powerful emotions of grief and loss. This episode offers a more precise language for talking about death in future episodes.

About Jeanne Proust

After studying in Bordeaux, Berlin, and Paris, Jeanne has been teaching Philosophy, Art History and French Literature for the last ten years in the US. During her PhD (Paris 1 Panthéon-Sorbonne), her research has focused on the pathologies of the willpower, both in philosophical and psychological perspectives, but her interests are wide: among many fields, she does research in Ethics, Philosophy of Technologies and Aesthetics.

While teaching in New York, Jeanne advocates for a widening of philosophical education beyond the Academia frontiers by participating in different events open to the general public; she taught philosophy at Rikers Island as a volunteer and at the NYPL night of Philosophy. Jeanne also holds a degree in Visual Arts; she collaborates with artists on her photography, drawing and painting works.

Jeanne is going to lay out the philosophical underpinnings of death. You're going to learn things every human should know. But then she’s going to share her human side, and talk about they way her training kinda failed her during a personal tragedy.  

Recalibrating the Timeline and Tone of Life's Biggest Conversations

Getting the tone right in a conversation about death can be really tricky. If you don’t acknowledge the grief and fear of others then you're viewed as cold. But if you are too tentative the conversation is boring and inauthentic. You don't get anywhere.

This show is going to work or not work based on the tone of the conversation. So this is the episode where we start to lay out precise language and mental models for better conversations. Thinking about how we might talk to children about death turns out to be a pretty useful approach.

So - I hope you can sit back and enjoy this Cliff Notes version of the philosophy of life and death.

This episode was produced by Pat Cupples. Not only did he do the reporting and editing, he also provided original music. Additional music is from the band Hotels & Highways.

Pictured: Roman marble bust of Epicurus

Join us on January 28th: "How to Host a Virtual Funeral" (Free on Zoom)

Sharon McRill is the founder and owner of the Betty Brigade. Her book, “Downsizing the Silver Tsunami” is the compilation of 16 years of working with thousands of clients and helping them resolve the moving problems and logistical and vendor questions that come up every day. They have put together a comprehensive reference tool that you can refer to over and over to help you navigate the difficult pathways of moving and downsizing.

In this episode you’re going to learn what happens to all of your stuff when you move into senior housing. It's an introduction to what Sharon calls, the "Food Chain of Stuff".

This episode was produced by me. Pat Cupples provided original music with additional music from the band Hotels & Highways.

The fact that you’re listening means you see the opportunity. To redesign the intersection of eldercare, senior housing, estate planning, and deathcare. 

We’re hosting two free events on Zoom coming up, the first is “Opportunities in Green Burial” and the second is “How to Host a Virtual Funeral” all the details and the registration page is on the webiste.

Photo by v2osk on Unsplash

Join Us: "How to Host a Virtual Funeral"