Conference
founder Brad Wolfe said inspiration to create Reimagine event came from his
grandparents’ experience of surviving Auschwitz: “What is so precious about
life that, in the face of death, we are inspired to fight for more time?” Partnering
with the San Francisco Palliative Care Workgroup, Reimagine offered 150 events
that looked at EOL from perspectives of healthcare + social services, arts +
entertainment, design + innovation, culture + spirituality.
Psychedelics and Death: New
Science, New Understandings was a conversation between
Temple Emanu-El Rabbi Sydney Mintz (who said Judaism does death well) and Richard Miller, PhD, clinical
psychologist and author of Psychedelic
Medicine: The Healing Powers of LSD, MDMA, Psilocybin,
and Ayahuasca (2017). Richard said psychedelics help at EOL to remove
cultural fear from death experience; he talked about LSD opening the mind to
realization that the world is one breathing organism, all beings are connected,
death is sleep without dreaming; his tombstone would state date of birth to
blank date of death because “who’s to say”?
End
of Life Project: A Theatrical Exploration of Death, Dying and Suffering was sold-out at Castro Theatre,
filled to over 900 people.
Dramatic readings of
scenes from Sophocles’ Philoctetes and The Women of Trachis by David Strathairn,
Frances McDormand and Marjolaine Goldsmith.
In both plays, there was a lot of screaming at the audience by actors portraying patients suffering in pain.
Community Conversation
moderated by Bryan Doerries, founder of Theater of War, and featured panelists
Eric Poche (Zen Hospice Project), Anne Germanacos (writer and “amateur student
of death”), Steve Weitz (JFCS Palliative Care volunteer) and Bonnie Lasky
(caregiver for her dying husband). What kind of EOL experience do we want?
One audience member talked
about a dying loved one “covered up with meds” such that the person was no longer
there, not awake when death happened. Is
it worse to hear dying people scream in pain or be complicit to silence when dying people can
no longer express themselves?
Money magazine reported, “A Growing Cult of Millennials Is Obsessed With Early Retirement. This 72-Year-Old is Their Unlikely Inspiration” (April 17, 2018), referring to Vicki Robin, co-author of Your Money, or Your Life (YMoYL). (When I read YMoYL originally published in 1992, it inspired me to maintain my simplified lifestyle and reject consumerism because money=life energy; YMoYL has been revised to emphasize financial interdependence, such as a community building to share resources and support.) Apparently, millennials are focused on “Financial Independence, Retire Early (FIRE) with more emphasis on the goal of FI than what to do for the rest of their retirement lives before they die?! When older adults retire at age 70, the “biggest challenge is to make your life as meaningful as it was when you were working,” according to Dr. David B. Reuben, Chief of Geriatrics Medicine at UCLA. Towards the end of life, we may think even more about making a contribution to society based on Erik Erikson's theory.
At the end of each
Reimagine event, participants received a box of cards inviting us to:
1. Remember: (fill-in-name) who inspires me to
(fill-in-blank). Included were cards
with photos of public figures and their quotes:
“Try to be a rainbow in someone’s cloud” by Maya Angelou (writer and
first African-American female cable car conductor), “You gotta give room for people to
experiment” by Mayor Ed Lee (who was also an organ donor), and “You need music, I don’t know why” by Jerry Garcia (Grateful Dead
guitarist).
2. Prepare: (fill-in-name) is a person I can
imagine talking to about helping me carry out my end of life wishes. Speak up about the things that are important
to you (advance health care directive), help family and friends be your
advocate (durable medical power of attorney), and for what you want to leave
behind (will, after gifting).
3. Wonder: (fill-in-blank) when I think about
end of life. Questions to ponder: where
would you have your last meal? What would it be? Where do you want your remains to go after you die? If you could leave one piece of advice for the next
generation, what would it be? What would you do differently if you knew that this was your last day? Year? Who would you spend time with? What would be
important to say? Do you think life would be better if we could live forever?
At Yom
HaShoah (Holocaust Remembrance Day on April 11) event, Gloria Hollander Lyon
spoke about surviving seven concentration camps during the Holocaust and
engaging in Tikkun Olam (repairing or
healing the world) by bearing witness and speaking out against prejudice,
discrimination and threats to civil liberties.
Six candles (representing 6 million Jews killed) were lit by Holocaust
survivors, followed by music (“Eli Eli” sung by Jan Peerce and “Avinu Malkeinu” sung by Barbra
Streisand) before a screening of Gloria’s documentary, “When I Was 14: A Survivor Remembers." For the past 40 years, Gloria has dedicated
herself to teaching the lessons of the Holocaust and published her memoir, Mommy, What’s That Number on Your Arm?
A-6374. (I attended Gloria’s book release reception nearly 18 months ago, and now it was a
privilege to work with her in organizing this moving remembrance program.)
At JCCSF’s 12th
Annual JCCSF Art of Aging Gracefully Resource Fair, Donald Abrams, MD, integrative
oncologist at UCSF repeated Cannabis as Medicine presentation, including its use during
end of life.
“Cannabis — also known as
marijuana — increases the desire for food, makes foods smell better and taste
richer, decreases pain and relaxes and elevates a person’s mood. Subsequent
studies have confirmed these effects, in addition to cannabis’ effectiveness in
reducing nausea and vomiting.
Patients at the end of
their lives can have problems with appetite, nausea, pain, anxiety and sadness…
I see cannabis as an extraordinarily
safe drug to be given if needed at the end of life.” –John Morley, MD, “Senior Focus: Should marijuana be legalized for end of life care?” St. Louis
Post-Dispatch (Oct. 10, 2013)
In her
new book, Natural
Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves
to Live Longer (2018), 76-year-old Barbara Ehrenreich (a cancer survivor) writes
that she’s given up on preventative care after realizing that she’s “old enough to die” (sounding almost like
Ezekiel Emanuel’s “Why I Hope to Die at 75,” article published in The Atlantic almost four years ago):
“Once I realized I was old enough to die, I decided that I was
also old enough not to incur any more suffering, annoyance, or boredom in the
pursuit of a longer life. I eat well, meaning I choose foods that taste good
and that will stave off hunger for as long as possible, like protein, fiber,
and fats. I exercise—not because it will make me live longer but because it
feels good when I do. As for medical care: I will seek help for an urgent
problem, but I am no longer interested in looking for problems that remain
undetectable to me. Ideally, the determination of when one is old enough to die
should be a personal decision, based on a judgment of the likely benefits, if
any, of medical care and—just as important at a certain age—how we choose to
spend the time that remains to us.”—Barbara Ehrenreich, “Why I’m Giving Up on Preventative Care: How Contemporary American Medicine is Testing Us to Death,” Literary Hub (April 9, 2018)
A recent Stanford University study, published in the Journal
of Palliative Medicine, suggests an EOL approach to facilitate better “preference-sensitive” care and informed
decision-making is for patients to share their bucket lists with physicians who can discuss the impact (if any)
of their medical treatments on their life goals. Researchers hope their findings will promote
more intimate discussions that focus on what patients want to make the most out of life,
rather than over-reliance on advance directives that focus on death (though
patients should still complete/update their advance directives). According to VJ Periyakoil, study author and director at Stanford Palliative Care Education and Training Program, regret is the most
common emotion seen in patients when they are dying. She also noted that participants who said
religion/spirituality was important were the most likely to have a bucket list,
which suggests that faith allows “the ability to imagine something is a proxy
for a level of hope even in the face of little evidence.”
