From Dorothy’s friend Alison: “Dear All,
Dor isn’t as active as she was, and she struggles with breathing but it hasn’t affected her urgency to get us all engaged in important death conversations. She’s grateful that she has been able to make them right in the space that most of you know as her dining room, which now features a hospital bed instead of a table. As you can see from the photo, she is still producing hats while looking at the birds from her bedroom window – these are an addition to the last hat photo! She is still amazingly positive and doing her best to die as well as she has done everything else in her life. This video is an opinion piece on health care rationing….
Dor feels uniquely positioned to be radically real about sharing limited resources, especially health care. With medical costs as the #1 driver of personal bankruptcy — and with the majority of bankruptcies among people with health insurance — it is beyond time for every one of us to conduct end-of-life planning conversations with our loved ones. Dor reads her opinion piece and asks us to have kitchen table conversations, to make them safe and sane spaces to deal with issues that will affect the living, the dying, and the surviving. Here are the five questions 1. Do your loved ones know your wishes around treatment and life extension? Have you documented them? 2. Would you want your life saved at all costs? 3. Would you say, “save me at all costs!” if you had to pay the bill? 4. Would you say, “Save me no matter what,” if it meant you used up the family resources leaving little or nothing for the living – and the dying – of your survivors? 5. What would it take to get that conversation started with someone in your family? Or with anyone who is safe for you to start death conversation?
Here’s the link:
https://youtu.be/1m-Ih54F3Rg
Videos and Documents- 2.5 to 5 minutes long
Introduction to Dying Dor’s Way: https://youtu.be/F8vSiTGk-rE
Uninformed consent: https://youtu.be/JdYT0_cFUmI
Why Dor isn’t surprised she got cancer: https://youtu.be/VR2NB2PF6y0
Interviews: these are longer videos
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Below, hoping these images will make life easier for others, Dor works with an art therapist from her hospice to create a collage of end of life conversations. Each image represents a different kind of conversation as she explains in the video, 1/21/2020. As usual, Dor makes the complex understandable!
Image, 1/21/2020, this image of the collage is at :03 on Dor's video, “A Conversation in Paint: Dying Dor’s Way Video with Stephany Underwood, art therapy intern”
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Image, closeup of center of the collage, at 2:01 on Dor's video, notice two tags next to the bird’s nest, one with the word “Suppers,” and one with the Suppers logo, also seen in banner below. Dorothy founded the wonderful Suppers program in 2005. In her book, “Logical Miracles,” Dor published success stories written by Suppers participants.
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From Logical Miracles Amazon page: “What does it take to turn around the habits that keep us sick, fat and depressed? Logical Miracles is a collection of stories by people in The Suppers Programs who found their personal solutions by experimenting with whole food. In an environment of nonjudgment, we cook, taste and feel our way to health, and we forge new friendships based on healthy living.”
Images below from cover of Logical Miracles:
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Above, 11/27/19, “Dor’s Dying Gift to Men: How women are just like cars”
From You Tube page: “Dor reads a paper she prepared and has been dying to deliver to men for decades: How Women are Just Like Cars. OK, it’s not about end-of-life planning, but it might help men live longer, happier lives.”
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Above, 1/5/2020, “Dying Dor’s Way Interview: On Grieving with Steve Gilbert”
Steve is a volunteer facilitator with Good-Grief.org/
From You Tube page: “Steve has experienced a lot of loss, his father to suicide, his mother, his sister and his wife. The culture in which his grieving takes place has evolved profoundly over the years. Most recently, he is helping others through the process by volunteering as a facilitator for the organization Good Grief. Dor and Steve want to help you learn how to be with grieving people, to understand your role, to reduce the amount of “dopey stuff” you might do simply because you don’t know how to be, or act. Steve’s golden rule is “just be there”. Dor feels similar. She just wants people to be real with her, even if that means admitting “I have no idea what to say to you.” They discuss how levels of intimacy work, and the need for “gatekeepers” — intimates who make sure that the needs and desires of the dying and grieving are observed. https://good-grief.org/”
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Above, 12/30/19, “Dying Dor’s Way: December 30, 2019 update and Revisiting the Five Love Languages at the End of Life”
Dor with with Corinne Zupko, counseling professor, The College of New Jersey
From You Tube page: “This is an update for Dor’s community December 2019. She feels that she is losing ground and she’s having a hard time deciding to make any more videos. She feels skinny, deteriorating, and not sure she’ll be effective anymore. She also still feels funny, loving, and full of important messages. As she passes the median survival time and experiences exceptionally high quality of life on hospice, she worries about people who get a terminal diagnosis: “How will they get information to inform their treatment decisions?” These videos are the only way people will hear about her choices and the quality of her life outside the treatment establishment. Dor shares her concerns with Corinne Zupko, counseling professor, The College of New Jersey. The second part is about the “five love languages”. Dor struggles with loved ones and visitors and revisits Gary Chapman’s work. She realizes that her miscommunications can be explained by Dr. Chapman’s love language work of 25 years ago. Even though his program was designed for couples, it’s highly relevant for love expression as she nears the end of life. https://www.5lovelanguages.com/ Connect with Corinne Zupko at: https://fromanxietytolove.com”
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Above, 12/21/19, “Dying Dor’s Way Interview: Pam and Sharon and Preparing to Cross Over”
From You Tube page: “Not everyone comes from a tradition that expects there to be a will. Though Pam lives in the world of end-of-life planning now, her family assumption was that everyone would get along; everyone would share; and all family members would take care of each other. Long before they “crossed over” her parents and grandparents had normalized death conversations; they had made family conversation of who gets what. Their survivors spread cherished items on a blanket on the floor and shared harmoniously — fueled in part by knowing that spirits would come back and haunt them if they didn’t do as they were told! We’re joyful talking about the “final party”. Sharon doesn’t want anyone mourning; she wants to fund a celebration. Pam wants to pay for a celebration of her life too. She’s going out dancing! These are important conversations. Sharon, Pam and Dor hope that inviting you in to our intimate conversation will help you create a better death for you or someone you love.”
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Above, 11/26/19, “Dor and her hospice nurse Courtney invite you in for an intimate view of the dying process. Dor feels lucky that her brain is still in tact and she is still able to manage her own dying. Dor needs help preparing for pain, both for herself and to spare her family the anxiety of dealing with it. They prepare the morphine. They talk about the signals Dor will get from her body and thoughts about when it’s time to stop eating as well as other signs of “natural death preparation”.”
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Above, Thanksgiving weekend, late Nov. 2019, includes Dor and her son Max, who has a PhD in chemistry and is a father himself: “In this radically real spiel, Dor shares her fury over being infantalized by family and friends. Max Mullen reads the definition of infantalize, which he will never ever do again. Seriously, almost everyone gets this wrong around Dor, who wants to function at her highest level of competence at each stage of dying. How we want to interact is highly individual among people and also highly individual within one person moving from a terminal diagnosis into actively dying. Dor’s best hunch: let the dying person set the tone.” Dor mentions at 5:20 that she does 40 deep knee bends a day to maintain her strength and independence.
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Added: Here is Max, future PhD in chemistry, at 4 days old with his grandfather holding him and grandmother looking on. Dorothy just out of the hospital in Dec. 1986 went well beyond the call of duty bringing newborn Max over to meet his grandparents. Posted by blog editor Susan
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Above, Nov. 30, 2019: “Dying Dor’s Way Interview with Claire: An abortion or a daughter–EOL planning with Mom,” “It took Dor a while to get up the nerve to ask her daughter Claire to do a video. It’s hard enough to watch your mother slip away, why invite strangers in to watch? But Claire showed up for Radically Real Spiels and shared her memories of early death conversations. Claire is Dor’s “miracle baby”. When pregnant with her, Dor got troubling but inconclusive test results that prompted conversations about the option of abortion. It was the most compelling of a series of painful experiences with Medicine that led Dor to create The Suppers Programs, which were designed with physicians to teach everything you can do without a doctor to promote health.” http://www.thesuppersprograms.org
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Above, Nov. 22, 2019 video: “As Dor experiences mounting losses, she writes messages to loved ones and visitors. Would you want your family and friends to know that your love and forgiveness are timeless? If brain changes or dementia are part of your dying scenario, would you want to say a few things now for the future, while your mind is still in tact? Dor gets help from friend Fran McManus, who shares on the loss of a loved one’s mind.”
At 2:40: Dor is the least judgemental person I’ve ever known so was surprised to hear her say at 2:40 above that she struggles every day not to judge people. Susan
Above, Video #5, Dying Dor’s Way
Hospice is among options for people considering cancer treatment and is the one Dor chose. From Dor’s You Tube page: “From the point of view of people searching for help informing their cancer treatment decisions, there are serious methodological problems. Dor’s experience will never be in the numbers because once you decide on hospice care, the system loses interest in you. With a very low five-year survival rate for stage four lung cancer even with treatment, she chose a course of acceptance and realistic hope that have led to exceptionally high quality of life.” posted 11/14/19
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Added:
“How To Be With a Dying Person”
Posted on
"My friend, Dorothy Mullen, was diagnosed with Stage Four lung cancer in Spring of 2019. She has spent the last few months helping people become more comfortable (or at least accustomed) to speaking about and planning for death. This is a guest post from Dorothy addressing the top 13 worries of others that she has encountered as she navigates this time in her life. My thanks go out to her for helping us navigate them, too. — LJR
How To Be With Someone Who is Facing Death
Terminal lung cancer hasn’t changed who I am; I’m just the dying version of me. I’m remaining in character. In practical terms this means I’m still always learning and teaching. It would give me an all-body smile to know you’re reading something that will help you be with someone who is dying. Starting from my closely held belief that there is no formula suitable for everyone, here are my answers to the questions people have asked. — Dor Mullen
- What should I say or do?
Let your dying person set the tone.
What clues do you have to your dying person’s priorities and
values? This is your guide: If their brain is still working, my hunch
is they will stay in character. Would they typically want to:
* talk sports * be touched * talk about pain and sorrow,
relief or joy * let go * eat * listen to music * feel appreciated *
avoid the subject * express love * do “bucket list” items * focus on
pleasure * talk about what gives them a sense of purpose
Assume unless otherwise proven that your dying person will
remain in character. Assume you will remain in character too. Support
the dying person where he or she is. Let him or her set the tone; it’s
his turn.
- How can I help? Red flags! Caution!
Think before offering help. Are you
offering something you can deliver? It’s tempting to comfort yourself
in the moment by offering and not as easy to fulfill. Close that gap
between what you offer and what you will deliver. For me, blanket
statements like, “I’ll do whatever you need,” or “Ask me anything,”
sound like “I love you” or “I’m so sad”. Nice to hear but hard to
answer. I know how to respond to: “Can I bring chicken soup Thursday?”
- How will I know if visiting is OK?
Does your dying person like visitors? Close care givers, if
any, may help you decide. Know why you are visiting. Is it for your
own comfort? This works if your dying person likes helping others and
wants to support you. This works if your dying person also wants to say
good-bye or share amends, or whatever is the mutual purpose. If you’re
not sure, let your dying person or close care givers take the lead. You
could just write a note. I love notes. I reread them. Some people use schedulers such as Caring Bridge patient websites to organize visiting and volunteering.
- What if I’m bringing my own needs into the room?
Can your dying person handle your needs right now or does he
or she need you to be with his or her needs? Are you there to manage
your own anxiety? Process your own uncomfortable feelings? Is it
possible to support everyone at the same time? Personally, I’m an
inveterate care giver so I’m fine in the role of listener and mother
confessor. That’s not always the case. Back to #1.
- Is this a good time to deal with unfinished business?
I’m certainly feeling the pressure to clean my heart, make
amends, clear up unfinished business. I also want to be open to others
who need to do the same, but I wouldn’t be able to withstand somebody
making me wrong or bad at this point. Back to #1, let your dying person
set the tone. If you say, “I forgive you,” for something they don’t
feel bad about, ouch! Probably all forms of, “You should have (could
have, might have)” are bad.
- What does a dying person like to hear?
I’m guessing we want to hear how we make a difference in
your life, or what you’ll remember us for (assuming we’re in
acceptance). But go back to #1: some people for personal or cultural
reasons have a hard time accepting appreciation, or even the fact that
they’re terminal. Personally, I love end-game expressions of gratitude
in all forms!
- What if I say the wrong thing?
Back to #1. Let your dying person set the tone. For me,
I’ll be able to tell you are operating from a clean heart. If the best
you can do is show up and awkwardly tell me that you don’t know what to
say, you get full credit for showing up. “I feel so sloppy.
I’m scared. I don’t know what to say to you,” sounds like “I love you,”
to me; another person might just want touch or to be read a favorite
passage.
- Is it OK to ask for help directing the conversation?
For me, yes! Go back to #1. Assuming that your dying
person acknowledges his or her terminal situation, you can ask questions
like, “Is it OK for me to talk about what you want to happen with
Fido,” or “do you want help selecting the music for your memorial
service?”
- What are common mistakes?
Making assumptions.
What I want you to know about me is I’m not scared of
death. I can help you with your fears and would enjoy that, but I’m not
scared of anything but too much pain. I would love to be asked how I
would like my final days to go. I need people to stay curious, not act
on bad assumptions about how I feel or what I need.
Using language that tells a dying person how they feel based on what you’re feeling
Does your language project your feelings onto your dying person, who may be feeling something completely different? If’ you’re sad, say so. If you’re,
petrified, admit to your feelings. If you use phrases like “You’re
strong; you can beat this,” “at this difficult time,” or “you must take
comfort in knowing…,” you are projecting your own uncomfortable feelings
on a dying person who may feel relieved, joyful or even sublime. Start
with neutral language that doesn’t put feelings onto a person. I can
love everybody for trying, but this is probably the most common and
annoying mistake people make around me.
Talking too much.
Sometimes touch or listening to a story or music, or simply sitting still is a completing experience.
Pressing someone to eat, treat, medicate or do something.
My hunch is people who enjoy self-determining will continue
to want to make up their own minds and people who take direction will
still take direction if their brains are still working. (#1 again.) For
me personally, pressing me to do something is the worst offense. Nature
prepares us beautifully for death. If my twitching, writhing or
moaning make you uncomfortable, we shouldn’t be together. These things
are very comforting for me, not a sign that I’m suffering but a sign
that my body is managing the pain. I expect to stop eating when I get
the signal from my body that it’s time to let go; I don’t want anyone
encouraging me to eat. I will ask for morphine if I need it, as long as
my brain is still working. My hospice nurses report seeing loved ones press a dying
person to eat: placing food in the mouth of an unresponsive person,
leaving a feeding tube in a person whose brain is more tumor than
brain. In my mind, pressing nourishment on a dying person is another
way for loved ones to not deal with reality and to soothe themselves
instead of the soothing the dying one.
For me, this is unwanted. It’s infantilizing.
- How can I protect myself?
Don’t take anything personal. Us dying people can be cranky,
smelly, demanding, irritable, uncomfortable, demented, or angry. Or
meek, poised, sweet, or weak. If you’re a visitor, you get full credit
for showing up. You get full credit if being together is too much and
you leave a note. If you’re a care giver, ask for help. We should
write a document on how to support care givers too.
- Is silence good?
Sure! Sometimes. Go back to #1. Personally, I want all
visitors to place their hand on my chest. You’ll be within an inch of
my heart and my tumor.
- What about when the end is near, there’s greater weakness, less communication?
Assume unless proven otherwise your dying person can still
hear and is aware of what’s happening in the room. Personally, I’ve put
up a sign telling people to look for signs that I’m trying to
communicate, the press of a finger, a blink.
- What’s a good read?
Atul Gawande: Being Mortal. It poses the
question: What’s a good day? How will we know if you want more time and
treatment? The answer might be for one person: “life is worth living
if I can eat ice cream and watch football.” That’s not what I’d want,
but you get the idea.
Naomi Feil: Validation Therapy, if you’re dealing with
someone who has dementia or Alzheimer’s. This made me a wanted and
comforting visitor for a loved one through advancing Alzheimer’s.
Final Note
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Above, Video #4, posted 11/12/19, Dying Dor’s Way: Dor and friend Jenny discuss planning ahead so that parents can comfortably die at home rather than going to a hospital, and that we can make similar plans for ourselves by putting our wishes on paper.
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Above, Video #1, Dying Dor's Way..."Radically Real Spiels on the End of Life:" posted 11/9/19. In the midst of a beautifully healthy life of service, still years before she'd be old enough to qualify for Medicare, Dorothy was diagnosed with stage 4 lung cancer. In her research, Dorothy found that topics like hospice care, end of life planning, and how to include loved ones in all of this haven't been getting the attention they deserve. So she's started a You Tube channel and will be posting short videos daily for those interested in these issues. From her You Tube page: "Diagnosed with stage four lung cancer, Dor invites her community into the process leading to a good -- or at least a better -- death. End-of-life planning, hospice care, helping loved ones engage in healthy death conversation, and the politics of cancer treatment are addressed."
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Added: Video of speakers (including Dor), 8/13/19, at Princeton Public Library on variety of topics in End-of Life Planning:
""End of Life: Planning is Everything!" A Collaboration of Lesley Rowley, Hereafter Partners, and Dor Mullen, The Suppers Program, Tuesday, August 13, 2019, Princeton Public Library"
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Below is Video #2, posted 11/10/19, in which Dor discusses "informed consent" or "uninformed consent:" From her You Tube page: "Dor expresses strong feelings about uninformed consent, which is misnamed informed consent. She has a problem with a medical culture that expects patients to sign off on procedures they don't understand and can't even pronounce. The system doesn't provide what it's supposed to provide, information that helps us make informed decisions about treatment. The lawyers and the money are on the side of the institutions, not the patient, when it comes to informing consent to treat."
Below, Video #3, posted 11/11/19: “Dor continues to describe why the sudden diagnosis of stage four lung cancer didn’t surprise her. Her life had been taken over by panic attacks. [This was about 30 years ago as Dor says in the video below]. Following psychiatric hospitalization, she found her way to the “quacks” who helped her turn her health around with nutrients, diet and lifestyle, normalizing blood sugar, and clearing out environmental toxins. At this point, she still didn’t know that underlying all her health and mental health issues was heavy metal exposure and the genetic inability to clear metals.” From Dor’s You Tube page
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