It’s not enough to get your paperwork done … make sure it’s done right!
In this episode we’ll look at several common mistakes people make when doing their advance directives–mistakes that could make it more difficult for their end-of-life wishes to be carried out. Learn how to get your paperwork right so you can relax!
This podcast is supported through the generous donations of listeners made on Patreon.com/eolu. When you donate just $1 or $2 per month I will thank you by mentioning your name on the podcast and promoting your cause!
Thank you to my latest patron: Jayne Boulton–I appreciate your support Jayne!
In the News:
An online article from Managed Healthcare Executive asks the question: Can Data Analytics Aid in End-of-Life Care Decisions? The author cites a recent study from JAMA that shows 70% of MD’s reporting that they have not been trained to have end-of-life conversations with patients and 73% of patients over the age of 65 have never had an advance care planning discussion with a doctor.
Medical data analysts have suggested that EHR’s might be useful to help health systems identify patients in need of end-of-life conversations. The article points out that current management of advance directives on EHR’s is poor since on average it requires clicks on 12 different screens to locate a patient’s AD, which takes 1.3 minutes–not fast enough in an emergency situation. In addition many patients at the end of life experience more than 3 transfers to different facilities and their paperwork is often lost in the process.
Much work needs to be done to help patients get their wishes met at the end of life! For that reason I have created a NEW online course to guide people through creating their advance directives, making them legal, and having conversations with loved ones and doctors about their wishes.
Would you like to bring your community together to talk about death? Here’s how …
In this episode we will deconstruct a large-scale death-positive community event and share with you the lessons learned from that experience with guest Holly Pruett, founder of Death OK: Let’s Talk About It. The goal of this discussion is to inspire others to create events in their own communities. Below you’ll find some previous podcasts with helpful resources.
This podcast and the End-of-Life University Interview Series are supported by the generous contributions of listeners through the EOLU donation page at Patreon.com/eolu. To thank you for your donation I will mention your name on a future podcast episode and promote your EOL-related website, business, organization, book or cause! Go to Patreon.com/eolu to learn more and contribute $1 or $2 per month!
In the news:
The staff in the ICU at St. Joseph’s Healthcare in Hamilton, Ontario have been connecting with patients and their loved ones by creating “word clouds” for each patient, using the patient’s name plus adjectives and phrases suggested by loved ones and staff members (see the example of a word cloud in this photo.) Healthcare staff say the word clouds help remind them of the humanity of each patient, allow them to get to know the patient better, and stimulate story-telling about the patient. Families often take the word clouds home with them to help with their grieving process. (Make you own word clouds atwww.wordle.com)
A mobile palliative care team has been providing care to terminally ill homeless people on the streets of Seattle. The team receives referrals from shelters and drop-in clinics then tracks down the patients, evaluates them, and gets them connected to appropriate care. The program is similar to the PEACH (Palliative Education and Care for the Homeless) Program in Toronto. Results of the pilot project show that hospitals stays for the homeless patients have been reduced by 25% and ER visits by 50%.
Interview with Holly Pruett:
Holly Pruett is a Life-Cycle Celebrant, Home Funeral Guide, and the founder of Death OK: Let’s Talk About It, a ten-hour day of inspiration, information and connection in Portland, Oregon. She is also the founder of DeathTalkProject.comand the co-founder of PDX Death Cafe.
In this interview she breaks down Death OK and shares the process used to create this community-wide event along with the lessons learned.
This highlights include:
Why a small team of organizers is best
The benefits of a private, intimate venue for such an event
The importance of sustaining volunteer commitment
How to structure the financing for a large event
The benefits of choosing an engaging and provocative keynote speaker
We hope you’ll be inspired to create your own community event! Find more information at www.DeathOK.com.
What does it take to have a smile on your face the day you die?
In this episode I pay a tribute to my Mom, Margaret Wyatt, who died 4 years ago in her own home, filled with joy and love. I’ll share the lessons I learned from her death about how each one of us can “Die Happy”!
This podcast is sponsored through the EOLU donation page at Patreon.com/eolu. By contributing just $1 or $2 per month you can help support the podcast and the End-of-Life University Interview Series. If you become a supporter I will happily promote your book, website, cause or organization on a future episode of the podcast!
Michelle Holmes – who has asked that I promote a favorite cause of hers: The Still Place.The Still Place is a charitable organization providing rest, renewal and re-creation to families living with serious illness in hope of fostering resiliency, empowerment and self-determination. We provide free of charge vacations, uniquely planned and lovingly facilitated for families who find it difficult if not impossible to get away, plan and experience the healing restorative properties of a family vacation. Go to their website at www.thestillplace.org to learn more!
Holly Pruett – who is the founder of Death Talk Project. Death Talk Project organizes workshops, rituals, Death Cafes, monthly movie nights, and other events in Portland, Oregon. Join in for useful, honest conversation about how we die, how we mourn, and how we care for and remember our dead. Holly also created the community event Death OK: Let’s Talk About It and Death Talk Project grew out of that event. Learn more at www.deathtalkproject.com.
A Tribute to Margaret Wyatt
My Mom died four years today, on the day I am writing and recording this episode, and I had the privilege of being at her bedside for the last 5 days of her life. She was happy and joyful and filled with love as she took her final breaths and she inspired me to want to teach other people how to die happy too.
Mom was in very frail health for the last 5 years before she died and had become housebound as a result. She only left her home a handful of times during those years, but she received help from a friend with grocery shopping, housework and laundry.
Believing that she was going to die soon, Mom set about to plan and prepare for her own death, though she didn’t realize then that she would live for 5 more years. She created a Living Will (using Five Wishes), planned her funeral and burial (and paid for them), and gathered together all of the financial, insurance, and estate documents that she thought my brother and I might need after her death.
She also talked about her own death, her end-of-life wishes, and how she imagined her own dying process. She made sure that both my brother and I knew what she wanted at the time of her death: to be in her own home, in her own bed, with me at her side providing care. And that is exactly what happened when she died. Her wishes were fulfilled because she had thought about them, planned for them and talked about them.
Mom was happy when she died because she was ready to go. She wasn’t afraid to die and felt that she had lived a full life. There was nothing left undone in her mind and she was looking forward to leaving her tired and painful body behind when the time came. Her death was happy, peaceful and beautiful because of the way she lived her life. Here are some of the lessons I learned from her about how to die happy:
Believe in something bigger than yourself. Mom always devoted her time to being of service to others. In her last years of life she spent every afternoon praying for people from the comfort of her reclining chair.
Have a daily spiritual practice.
Prepare for and talk about death. As already mentioned, Mom was ready in every possible way for her own death.
Let go of attachments. She freed herself from some of the burden of material possessions by giving things away to her visitors for 5 years.
Make amends with the past and with other people.
Be satisfied with life just as it is.
Make the most of whatever you have been given.
My Mom is dearly missed but I am comforted by knowing that she was happy when she died. Her beautiful death inspired all of the work I have done in the past 4 years with End-of-Life University, Death Expo and this podcast. I’m passionate about helping everyone find a way to die happy! I wish you could have met her ….
In today’s episode we’ll look at some common euphemisms for death and learn how and why they came into use, how to break down our societal taboos against talking about death, and when it might actually be appropriate to use euphemisms.
Remember that this podcast is an offshoot of the End-of-Life University Interview Series, which includes two interviews per month with experts from all aspects of the end-of-life arena. If you are not already registered sign up here to get email notification each time a new interview is posted.
Support for the EOLU Series and this podcast comes from your generous donations at Patreon.com/eolu. When you support this show with just a $1 or $2 per month donation I will mention your name and promote your cause on the podcast as a thank-you!
In a new feature for this podcast I will start by highlighting some recent “death-positive” events in the news:
First a wonderful story appeared in USA Today about Morrie Boogaart, a 91-year 0ld man living out his last days in an assisted living facility in Michigan. While he his mostly bed bound due to his physical health, Morrie spends his days knitting hats for the homeless. So far he has given away over 8,000 hats! Thank you Morrie for being an inspiring example of how to live fully for all your days and use whatever energy and capacity you have to be of loving service to others. You are my hero!
Next a study reported in the Journal of Psychopharmacology and on ScienceMag.orgdemonstrated that cancer patients who were given the hallucinogen psilocybin experienced a significant decrease in depression and anxiety. According to the author, the patients who had a “mystical experience” while using the hallucinogen were the most likely to have a reduction in fear. This compelling finding supports the data from consciousness studies that show that as consciousness develops there is less and less fear of death at each expanded stage of development, which will be significant later in this discussion.
As we turn to look at the use of euphemisms about death I want to explain why I use the term “end of life” in many of my discussions because some people have accused me of “soft-peddling” death when I use that phrase. But here’s what I mean when I refer to the end of life: I see End of Life as the final stage of human development that incorporates the process of dying, death itself, and the time after death.
For me, End of Life describes the phase on our journey through life when our attention finally turns to the fact that we are mortal and death is inevitable. When we begin to prepare for our eventual death we have entered the End-of-Life Stage in our human development. For some this stage doesn’t start until the process of dying is underway, but for others of us it begins earlier, when death may still be many months or even years in the future. So “end of life” is not a euphemism for death – it is a term that incorporates much more than the moment of death or the dying process.
An interesting article from the Journal in English Lexicology describes the functions of euphemisms throughout human history:
To protect from discomfort over a subject that is “taboo”
To mislead or misrepresent (as in some advertising)
To present in a more positive or “aspirational” light (e.g. using “senior living facility” rather than “old folks’ home”)
To reveal the hidden truth of something or remove a stigma
To bind a group together and create a shared identity
To entertain and lighten the burden of something that is difficult to bear (e.g. medical staffs using humorous references to cope with emotionally heavy situations)
To refer to all euphemisms as dishonest or misleading is to miss the fact that they have had a positive purpose throughout history: they allow people to discuss a taboo subject using terms that are less uncomfortable and triggering for them.
Most euphemisms change over time as taboos are confronted and dismantled. But some of the alternative terms for death have survived for centuries:
to “lose” a loved one to death has been in use since the 12th century
“pass away” or “pass on” have been commonly substituted for the word “die” since the 14th century
“deceased,” “departed” and “no longer with us” have been used since the 15th century
Interestingly not only have those euphemisms survived over hundreds of years they still have exactly the same meaning as they did when they first became popular. This is evidence of the fact that the “death-taboo” has not changed or broken down much during all of those centuries.
But we are part of a pioneering group that is trying to dispel the taboo about death so we freely use the words “dead”, “die”, “death,” and “dying.” But the majority of people in our society are still not comfortable with those words.
In fact, the consciousness of most people in our society has not yet evolved to a level that diminishes the fear of death. So they react to direct language about death with fear and rejection.
To break down a societal taboo there are at least two different approaches:
The rebellious approach, where unfair practices are exposed and denounced publicly, while advocating for openness and freedom. This approach brings much-needed attention to the taboo issue and pushes toward change. But it risks triggering resistance and strengthening the taboo for those who are afraid of the issue.
The quiet approach involves using positive language and energy to engage conversations that are not too confrontational. This approach also normalizes the taboo subject and even celebrates it with special events (such as Dying to Know Day.)
While the rebellious approach is needed to draw public attention and to shine the light on areas where change is desperately needed, the quiet approach is equally important to draw people closer to the issue by helping them to feel safe and to verbalize their fears.
This “quiet approach” may require us to use euphemisms judiciously so that we don’t repel or frighten away those who want to talk about death but do not yet feel comfortable with the language. Insisting that everyone use our appropriate and preferred terms for death may actually discourage and alienate them from conversation.
So if someone needs to say “My father passed away last year” or “I lost my father last year”, don’t correct them at that moment. Allow the conversation to unfold on that person’s terms because for now it is better to talk about “passing away” than to shut down the discussion altogether. Remember: that person does not yet have the same consciousness, awareness and comfort level with death that you have attained. Have compassion and meet people where they are so that you can gradually encourage and guide them to grow.
Until next week when a brand-new episode will air, remember to:
It’s a brand new year! Let’s look ahead and see what’s possible in 2017!
In today’s episode of the podcast we’ll look ahead at the coming year, study the trends in the death-positive movement and discover where it might be possible to create new volunteer and career opportunities for ourselves and our communities in 2017.
First I’ll share my own goals for the coming year, which include revising, editing and publishing the two books I wrote in 2016. I also plan to release two new training courses this spring and have lined up a fascinating group of speakers for the End-of-Life University Interview Series. To stay up-to-date on all the latest interviews and offering from EOLU, be sure to to sign up for the mailing list here.
Thank you from the bottom of my heart to all the contributors to this podcast on Patreon.com/eolu. Your support helps pay for the expenses of creating this podcast and the EOLU Interview Series. If you’d like to become a patron just go to Patreon.com/eoluand sign up to contribute just $1 or $2 per month.
Here are some of the Trends I’ll be watching in 2017:
Increasing number of Palliative Care Programs in hospitals across the country. Though many of the current programs are either understaffed or underfunded, these problems are likely to be corrected in the near future. To meet current standards, each palliative care team must have a chaplain and a social worker so if you have training in either of those fields you might find employment opportunities in a palliative care program in your community.
Need for creative solutions for hospice care. Because for-profit hospices are taking over many of the smaller non-profit hospices there is a risk that uninsured patients or those with needs for expensive care might be turned away. There is a need for social-model hospices (see Episode 23) and possibly for community-based non-profit, non-Medicare-certified organizations that can help bridge gaps in services for hospice patients. Here are some recommended training programs for becoming an end-of-life doula or midwife:
Need for more caregivers. As baby boomers age and approach the end-of-life the caregiver shortage will become a much greater issue. Opportunities will exist to create caregiver training and support services in communities and even to start businesses that employ caregivers.
Community outreach can help support the changes that are slowly occurring in the healthcare system. One of the best ways to encourage change in healthcare is to empower consumers to demand changes from their physicians. This will require outreach and education in the community. Here are some ideas for outreach and links to learn more from previous podcasts:
Create an “Inreach” for members of the EOL community by starting a discussion group, networking event or collaboration opportunity for those who are already working in this arena.
Bring volunteer movements to your community. Consider starting a group of volunteer caregivers who can provide respite care for family caregivers or start your own chapter of Threshold Choir, Twilight Brigade, or No One Dies Alone.
Provide education for your community either as a voluntary act of service or as a paid instructor. Here are some possible ideas:
Assist people to correctly complete their advance directives.
Teach a community class on death and dying.
Teach about green burial, promote a natural burial ground in your community, help people access green burial supplies
I hope these ideas inspire your own personal goals for 2017! Stay connected with me and keep tuning in to the podcast. Let me know your own inspirations and plans for the New Year by adding your comments.