Death and Dying Conferences, Death and Dying Education, End-of-Life Care, End-of-Life Education, Palliative Care

End Well, a Symposium on Redesigning the End-of-Life Experience, San Francisco, CA 2019

The movement to bring the subject of mortality into mainstream conversation has been on-going for at least 10 years in the U.S.  As a result, the number of gatherings has increased.

The End Well Symposium, now in its third year and soon to be fourth, is a part of this movement.

The 2019 production in early December featured a star-studded kick-off with ABC-TV‘s The View co-host Meghan McCain sharing candidly and compellingly about the death of her father Senator John McCain. She feels everyone should have a discussion about this subject with loved ones, learn their wishes, and do the best one can to prepare.

Country singer Tim McGraw talked about the experience of attending his dying father. As a result, he joined the Board of Directors of Narus Health, a Nashville-based palliative care provider, “to ensure broad access to high-quality care during times of serious illness and through the end of life.”

There were 26 other speakers including author/facilitator/interviewer and social change maker Courtney Martin whose high energy and thoughtful introductions kept the day-long gathering proceed smoothly.

Shoshana Ungerleider, MD and philanthropist, whose family foundation is behind the End Well Project, graciously and discreetly hosted as well. She succeeded with her goal of introducing a cross-disciplinary line-up that shared her philosophy – death and dying is not only a medical issue but most importantly, a human issue.

Each speaker was unique and dynamic in his or her own way, contributing to the dialogue about creating quality of life for patients at any phase of illness in a variety of settings.

Public and private sector speakers were physician authors, technologists, caregivers, patients, one attorney/end-of-life doula/ordained minister Alua Arthur, spiritual leaders, artists, innovators.

Among the younger voices sharing stories this year were palliative care physician, author, USC Medical School professor Sunita Puri who gave a heartfelt talk based on her book That Good Night: Life and Medicine in the 11th Hour mentioning influences of family health, Hindu poetry, and the importance of word choice and words as tools . Yoko Sen spoke lovingly and compassionately about the importance of healing sounds at the end-of-life. Sen was a speaker last year as well. She is a musician, sound alchemist, and TEDMED speaker.

It was moving to watch Harvard-educated August de los Reyes, Chief Design Officer for Varo, roll onto the stage in his wheel chair to talk about his mission to improve the financial health of Americans through better services and mobile-centric design that include the disabled. De los Reyes was formerly at Xbox, Microsoft and Pinterest. His paralysis is a result of a hospital mistake. His positive energy despite his health condition is most inspiring.

Among the older adults were fine and funny writer Sally Tisdale, RN (Advice for Future Corpses and Those Who Love Them plus other noteworthy books and essays) whose talk was educational and supportive – tender care for dementia patients at end-of-life.

Jonathan Bartels, a UVA trauma nurse and palliative care liaison, spoke about how he created The Pause – silence in acute care settings, intensive care units, and emergency rooms to honor any person who has just died. His empathetic vision has been adopted across the globe and is now taught as a part of compassionate care education for healthcare workers.  See https://thepause.me/2015/10/01/about-the-medical-pause/

Marvin Mutch, son of a Holocaust survivor and a Baptist minister who spent 41 years in prison, spoke about inter-generational trauma and his work with end-of-life at San Quentin with the Human Prison Project.

Much admired San Francisco palliative care and hospice physician at UCSF, and former Executive Director of Zen Hospice BJ Miller (also with a compelling health history) spoke about his desire for more human-centered care for the ill and the dying. His newly released book, co-written with Shoshana Berger is A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death.  See http://www.centerfordyingandliving.org for his mission statement.

Frank Ostaseski, author and revered Buddhist hospice teacher at End Well Symposium 2019

The piece de la resistance was the last part of the program, an interview with revered Buddhist teacher and hospice worker Frank Ostaseski, author of the popular book The Five Invitations: What Death Can Teach Us about Living.  After a life-time at the bedside of others, he spoke soulfully about the paradox of vulnerability – how he was being cared for following a stroke a few months ago.

For two years, the End Well Conference in San Francisco, CA required a $600 entrance fee for the day. This year founder Ungerleider and her board kindly expanded the conference to a live on-line all-day event for $25. This was a gift for those who could not attend because of commitments they have, or because leaving one’s city or country to attend requires extra resources and time.

See this link for bios to the presenters:

https://www.endwellproject.org/speakers/

See this link for videos of some of the TED-style talks:

https://www.endwellproject.org/watch/2019-symposium-videos/

Note: The Ungerleider Foundation financed the production of two fine documentaries about the end-of-life experience, End Game and Extremis, both available on Netflix.

Note no. 2:

There are many other such conferences and symposiums throughout the world, primarily in Australia and the UK, and others as far flung as India and Singapore. I intend to list some of the 2020 gatherings in another blog for those who are interested.

Also notable are small volunteer-driven gatherings of Death Cafes (55 countries), Death over Dinners, Conversation Project get-togethers, faith-based meetings, senior center events, and more on a continuing basis, usually monthly.

Wellness Shepherd  blog author Wendy Jane Carrel, with 20 years + of hands-on senior care and palliative care experience, is currently involved with a humanitarian mission in Guadalajara, Mexico, www.JuntosContraelDolor.com, the only 24/4 palliative care hospital with outreach to 100 families at home. She is also collaborating with www.HolaHospice.org , currently creating a senior home and hospice in the state of Michoacan, Mexico.

Death and Dying, Death and Dying Education, End-of-Life Education, Palliative Care

A Visit to the Beautiful Dying Expo in San Diego, California 2019

For those of you working in palliative care and hospice, or those of you interested in the subject of end-of-life, transitions, and grief, there are a vast number of educational and support opportunities sponsored by foundations, medical centers, universities, small groups, and individuals around the globe.

This year, I attended a new event in California…

Beautiful Dying Expo, November 2, 2019 which was founded and produced with love and attention by author (Exit Papers 101: Prepare for the Final) and End-of-Life Doula Michele Little at the San Diego Convention Center.

This first time gathering included palliative care and hospice professionals, educators, and volunteers; authors/philosophers/teachers/guides; green burial enterprises; music thanatologists; scientists, and, the public.  A “Successful Aging” Expo, in full swing in an adjacent hall, brought curious older adults to attend as well.

According to Little, “Beautiful Dying Expo’s mission is to expand awareness and encourage meaningful conversation, demystifying the process of dying and death by bringing industry experts together to share current tools, new ideas and resources with the public.”

Noteworthy were the excellent panels moderated by author, podcast host, hospice physician, and founder of End of Life University on-line Karen Wyatt, MD.  To read more about this extraordinarily dedicated educator and spiritual teacher please see www.EOLuniversity.com or

https://wellnessshepherd.com/2018/08/05/death-dying-education-a-chat-with-end-of-life-universitys-karen-wyatt-md/ 

Hospice Physician Karen Wyatt
Karen Wyatt, MD, Author and Founder of End-of-Life University

The Comfort Measures and Caring for the Dying panel included Dan Diaz of End-of-Life Options (husband of Brittany Maynard who died of a brain tumor with assisted dying in Oregon), author, hospice nurse and chaplain Gabrielle Elise Jimenez (www.thehospiceheart.net), Sharon Lund (author and NDE near death experience speaker), Roger Moore a medical hypnotherapist, Elizabeth Padilla of the Conscious Dying Institute (www.ConsciousDyingInstitute.com ), Dr. Karl Steinberg palliative care physician, and Dr. Bob Uslander (Medical Director and Founder of Integrated MD Care).

Beautiful Dying Expo Advisory Board members San Diego palliative care physician Karl Steinberg, and Santa Barbara-based video and event producer Penny Little

The End-of-Life Choices and Planning panel included Scott T. Barton, PhD of UCSD School of Medicine’s Anatomical Department, estate attorney Adam Englund “the best bequest is to have your affairs in order”, Healthcare Chaplaincy member and speaker Ben Janzen (Dr Theology, PhD, VITAS Healthcare Chaplain and Bereavement Manager), Eric Putt, MBA of Thresholds Home and Family-Directed Funerals, Samantha Trad the California Director of Compassion and Choices, and Shawn LaValleur Adame founder of DIY Dying. Drs. Steinberg and Uslander also participated (see paragraph above for their details).

Also noteworthy were panels about Advance Care Planning, POLSTs (in California), end-of-life planning and options for veterans, end-of-life choices, and more.  Among the unique exhibitors, workshop hosts, and musicians were Living Reef Memorials (“giving new life to our oceans”), Joshua Tree Memorial Park natural burials, Liz Fernandez DVM on pet euthanasia, Good Grief mandalas, and healing spiritual music from Gia George of http://www.divinelygia.com.

In honor of Mexico’s Day of the Dead it was an honor for me to share an overview of dying in Mexico – family and religious traditions, rituals, plus their origins and meaning told through stories I’ve been witness to based on two years as an educator and outreach liaison at www.JuntosContraelDolor.com – the only 24/7 palliative care hospital and hospice in the state of Jalisco, another two years dedicated to folks nearing end-of-life in a small village at Lake Chapala, and research volunteer work for www.HolaHospice.org to establish a senior home and hospice in the state of Michoacan.

Mexican paper mache’ Catrina dolls created by Professor Ernesto Eduardo Figueroa and his sister Ana of San Miguel Allende and Celaya. These dolls, dressed in French-influenced gowns from around 1900 telegraph that death is democratic and that even the wealthy do not escape it.

As a result of my expo presentation three hospice nurses, two bi-lingual, were excited to offer volunteer services in Mexico!! What a happy synchronicity, all due to Michele Little’s invitation for which I am grateful.  Thanks also to Michele and team for creating a Day of the Dead altar in the middle of the expo room!!!!

Finishing touches were offered at 8:00 p.m. by idiosyncratic guest speaker Stephen Jenkinson, a Harvard-educated theologian and social worker, founder of Orphan Wisdom, and former director of palliative care at Mount Sinai Hospital in Toronto, Canada.

Canadian Stephen Jenkinson, author and speaker

Jenkinson has spent years of his life dedicated to promoting the acceptance of death and is the author of several books including the Nautilus Award-winning Die Wise: A Manifesto for Sanity and Soul. The National Film Board of Canada produced a documentary about Jenkinson and his philosophy entitled Griefwalker.

The 2020 educational event will take place in San Diego, CA October 31 and November 1.

See https://beautifuldyingexpo.com/

Death and Dying, Death and Dying Education, End-of-Life Education, Health & Wellness

Unique Learning Experiences at Death Cafe Santa Barbara and Death Cafe Santa Monica

In January of 2018 Loretta Downs, M.A. gerontology, and I co-founded Death Café Ajijic aka Café Mortality Ajijic at Lake Chapala, Mexico.

The first café started the next month with the intention of encouraging the mostly retired community to talk about and prepare for end-of-life, not only to save loved ones and neighbors a lot of grief and time, but to provide a space to talk out feelings, hopefully leading to more well-being.

Because we travel a lot, we invited other health professionals in the community to join as volunteer hosts. We have been fortunate. There is now a rotating team to handle responsibilities for the all-volunteer events starting in 2019. We continue to do our best to improve the experience for attendees. One of the best ways for me to learn is to experience other Death Cafes.

For those of you unfamiliar with Death Cafes, they have been in existence since 2011 and are now in 63 countries of the world.  See www.DeathCafe.com for a café near you.

I was recently in Santa Barbara, CA, originally a Spanish mission post, to attend the Santa Barbara Death Café.

It was a pleasure to enter the donated venue at 11 E. Carrillo Street, the Hill-Carrillo Adobe. Beautiful place built in 1825. It is on the National Registry of Historic Places.

Hill-Carrillo Adobe, circ 1825, Santa Barbara, CA
Hill-Carrillo Abode, Santa Barbara, CA

There are three dedicated hostesses in Santa Barbara. One of them provides her grandmother’s tea cups and linen. Others bring cake or cookies.  Attendees offer donations to defray expenses.

Death Cafe Santa Barbara tea table

One of the surprises for me was that Santa Barbara Death Cafe provides a mobile library. They bring books in a large carton each month for participants to check out!!  I love this idea!! 

Death Cafe Santa Barbara lending library

Participants in Santa Barbara are all adults, mostly older adults. In a group of about 20, there were two men, one a recent widower.  We introduced ourselves to each other at a long, rectangular table, one by one, sharing briefly what brought us to the café.

Conference table at Hill-Carrillo Adobe, Santa Barbara, CA

We dispersed after the introductions to talk in groups of three, four, or more. It was organic, and attendees were encouraged to move to another group if they so desired. I see how attendees return over and over again. The hostesses and environment feel cozy and safe.

Thank you Death Café Santa Barbara and Center for Successful Aging for your hospitality!!!

I also attended an intimate Death Café in Santa Monica a few days prior to the Santa Barbara Café. It was hosted by a lovely woman at her office space. She is a psychologist, grief counselor. death doula, and drama therapist from Pasadena. There were five of us all together. The counselor led by asking why each came, and the other three participants, each in their 30’s, were off and running, lively and engaged from the start. Time went by quickly. This multi-talented lady also offers a Death Goes to the Movies night. Recently she screened a documentary about a psychiatrist/musician preparing for his green burial.

Both cafes in Santa Barbara and Santa Monica were unique, rewarding experiences. You may find the next dates for these Death Cafes or others near you at http://www.DeathCafe.com.  If you do not find one, perhaps you may have a desire to start one.

Please see the following links for articles about two of the cafes in Ajijic if you are interested – how we organized, and how attendees shared experiences at the end.

https://wellnessshepherd.com/2018/02/25/death-cafe-ajijic-mexico-ex-pats-and-snowbirds-talk-gently-about-mortality/

https://wellnessshepherd.com/2018/08/12/the-death-positive-movement-is-alive-amongst-retiree-ex-pats-at-lake-chapala-mexico/