Reimagine End of Life

Reimagine End of Life (EOL) https://www.letsreimagine.org/ was a weeklong event that “envisions a world in which we are all able to reflect on why we’re here, prepare for a time when we won’t be, and live fully right up until the end.”

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?

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 12^th 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.”

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. 

Bucket list

Preparing to "kick the bucket"

At this month’s Jewish Community Center of San Francisco’s 2^nd Annual Embracing the Journey End of Life Resource Fair, attendees were presented with a bucket list kit—complete with bucket, pencil, mini-composition book and instructions to answer: What do you want to do before you “kick the bucket”?

I thought been there, done that.  Long before the Hollywood film The Bucket List (2007), I compiled a list of places to visit and pursued them all.  While I enjoyed the anonymity and stimulation from exposure to different cultural experiences during my world travels, however ephemeral, I felt world-weary after I became eligible to join Travelers Century Club.  Like Thomas Jefferson noted, travel makes one “wiser, but less happy.”  So I reduced my carbon footprint by staying home, content to put down roots while returning to my childhood pastime of gardening (being with nature).   

“…chasing bucket-list thrills ignores a deep psychological truth: You don’t need to make yourself happy in old age.  We get happier naturally as we grow older… The increased happiness doesn’t come through doing but simply through being.  It is the natural result of lower expectations and ambition, less emotional volatility, increased gratitude and acceptance and enhanced problem-solving skills.

In fact, the need for a bucket list goes against our deepest instincts as we age. Older brains are less influenced by novelty-seeking and more by conscientiousness; they are less impetuous and more emotionally stable.” 

– Marc E. Agronin, MD, geriatric psychiatrist, It's Time to Rethink the Bucket-List Retirement 

Stan Goldberg, cancer survivor, hospice volunteer and author of Lessons for the Living: Stories of Forgiveness, Gratitude, and Courage at the End of Life, presented, One Day to Live: What Would You Say and Do?

1. focus on journey – makes it easier to accept losses and prepare for death; start with one simple, enjoyable activity
2. ask for forgiveness – makes you more peaceful
3. offer forgiveness – begins healing
4. understand what/when you can’t forgive – work towards understanding
5. let go of what you can’t change
6. offer thanks for kindness shown – change relationship
7. complete unfinished business
8. create legacy – make a difference 

Therapeutic humor expert Allen Klein provided comic relief in his presentation, Seeing Demise Thru Humorous Eyes: How Cartoonists, Comedians and Cinematographers Help Us See Death as Less of a Grave Matter.   My favorites were clips from Woody Allen films like Hannah and Her Sisters (life affirmation after attempted suicide) and Love & Death (dance with death).

End of Life (EOL) Options (ways to "kick the bucket")

Matt Whitaker, Multi-State Implementation Manager at Compassion & Choices, provided an overview of authorized EOL options:

1. refuse treatment
2. discontinue treatment
3. hospice – “gold standard” for last 6 mos. covered by Medicare, but average utilization only 20 days
4. VSED (Voluntarily Stop Eating & Drinking) – death by dehydration
5. palliative sedation – induce coma
6. aid in dying – legal in 5 states, OR (since 1997), WA (2008), MT (2009), CA (2016) and CO (2017)

California’s End of Life Option Act requires self-ingestion of a lethal dose of 100 capsules of Seconal, produced by Valeant Pharmaceutical, at a cost of $4,000; in California, only 80% of private insurers and Medi-Cal cover this cost.  A 1997 federal law prohibits use of federal monies (Medicare, VA) to cover aid in dying costs. 

JFCS Seniors at Home hosted End of Life Option Act: Effects on our Practice panel presentation:

• Linda Blum, GNP, Palliative Care Coordinator at California Pacific Medical Center: shared two cases when patients were not able to exercise EOL Option due to short time frame of patient with untreatable gastrointestinal bleeding who died in hospice at home before he was able to manage 2 requests to doctor, and another patient with ALS who was not able to self-administer aid-in-dying drug; in both cases, it was “care as usual, the old way.”
• Maryellen Collamore, ASW, Oncology Clinical Social Worker at UCSF: talked about her role to provide educational materials on EOL Option and to conduct psychosocial assessment of patient (motivation for inquiry, understanding of diagnosis, social supports, defining quality of life, perception of dying process, exploring belief systems, etc.); patient also must obtain mental health evaluation by psychiatrist; easier to find consulting MD than to find MD who will actually prescribe aid-in-dying drug; patient’s initial inquiry opens door to conversation, and most patients go to hospice.
• Lael Duncan, MD, Medical Director at Coalition for Compassionate Care California: opined that access remains an issue, given the length of the process (patient makes 2 oral requests > 15 days apart, patient attestation 48 hours prior to ingestion) and few participating providers. She described lethal prescriptions—traditional high dose barbiturate (100 capsules of Seconal used in Oregon) dissolved in 4 oz. water; cocktail mixtures (opiates, benzos, cardiac meds); complications can arise if patient has difficulty swallowing, digestive issues, insufficient absorption; time to death depends on underlying disease process and patient’s physiology, but usually deep coma within 10-15 min. after ingestion.
• Redwing Keyssar, RN, Director of Palliative Care at JFCS Seniors at Home: shared two cases of patients who changed their minds about EOL due to different outlook and changed circumstances because pain and symptoms were better managed. 

Lonny Shavelson, MD, started Bay Area End of Life Options in Berkeley, to consult with physicians and patients who are deciding whether to participate in EOL Options Act. He sees writing the lethal prescription to a terminally ill patient as the last resort only after considering alternatives (hospice and palliative care approaches).  

Documenting life

At Rhoda Goldman Plaza, Gloria Hollander Lyon, who survived seven concentration camps during the Holocaust, read excerpts from her memoir, Mommy, What’s that Number on Your Arm? A-6374: failing Dr. Mengele’s inspection and then escaping the gas chamber by jumping off a truck at age 14; later living with a foster family in Sweden after liberation when she noticed she lost her sense of smell – perhaps her body’s defense mechanism to protect herself from the horrific stench of bodies burning in the gas chambers and crematoria; and then returning to visit Auschwitz in 1991 when she finally regained her sense of smell after 47 years. 

Addressing an intergenerational audience that included her son, Lyon said her father told her what is important: do not cry over what is lost if you have freedom for continued life, let it rest and start all over; those who survive are eager to tell the world that it’s worth surviving regardless of loss. 

Lisa Kokin’s Inventory, exhibited at From Generation to Generation: Inherited Memory and Contemporary Art at Contemporary Jewish Museum, is composed of over 1,000 pieces of objects representing the lives of those who endured the Holocaust.  Inventory was created in 1997 after the artist, whose own Jewish family left Europe before Hitler’s rise, visited Buchenwald concentration camp and confronted the piles of objects left behind.

At this month’s meeting of San Francisco Task Force on Hoarding, Carolyn Rodriguez, MD, PhD, Director of Stanford Hoarding Disorders Research Program, talked about her research combining Buried in Treasures (BIT) workshop support group with one-to-one home de-cluttering.  She viewed hoarders as “enthusiastic collectors” and talked about elevating ordinary objects into art by Marcel Duchamp’s Readymades and Andy Warhol’s Time Capsules.  She mentioned artist Song Dong’s Waste Not installation of over 10,000 everyday objects collected by his mother in their Beijing home over five decades that reflects on culture of frugality; in persuading his mother to make art out of her possessions, the artist showed respect while also improving the quality of home life by de-cluttering – more creative than the KonMari method! 

As in Roz Chast’s Can’t We Talk About Something More Pleasant? discussing hoarding and even the inevitable like end of life can be uncomfortable for some.  Yet, the wisdom of Ecclesiastes chapter 3 reminds us: “there is a time for everything … a time to be born and a time to die … all come from dust, and to dust all return.”

With Howard Levy, Executive Director at Legal Assistance to the Elderly (LAE) for 28 years until his retirement today, all discussions are possible! (Though professionally, Howard is probably not as candid as his high school classmate Pepper Schwartz, AARP’s Sex and Relationship Expert and author of the sizzling erotic memoir, Prime: Adventures and Advice on Sex, Love and the Sensual Years.)  At weekly case acceptance meetings deftly facilitated by Howard, all staff and volunteers present contributed to the lively, often passionate, discussions for each client intake after hearing the facts.  Occasionally tired of the faux (steamed, not authentically boiled) bagels brought in by Howard, staff and volunteers turned the weekly meetings into potluck affairs.  Howard and the mostly senior staff at LAE remind me of The Supremely Old, Supremely Sharp, Supreme Court, with their wit and crystallized intelligence, which gets better with age. 

Inspired to create my own art, here’s collage of Howard's greatest hits at LAE’s office and fundraising events!