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

Beautiful Dying Expo 2020: Death and Dying Colleagues from 10+ Countries Advocate for Thoughtful Preparation and Planning for One’s Demise

November 13-15, 2020 represented three full days of listening to and interacting with “conversations on the bench” via the new Hopin.com platform at the second annual Beautiful Dying Expo, produced by author and certified end-of-life midwife Michele Little of San Diego and San Francisco, CA.

Little, with co-host Kimberly C. Paul (filmmaker, creator Death by Design, and former hospice caregiver), guided an eclectic and worthy gathering of evolved, connected and compassionate folks dedicated to End-of-Life work. They shared best practices for advance health care planning, financial and estate planning, preparing for long-term illness or sudden illness, ancient traditions and rituals for end-of-life care, green burials, grief, and more.

Screen shot of Beautiful Dying Expo 2020 on-line with Kimberly Paul co-host and Expo Founder Michelle Litle

The expo goal according to Little?  “To help you see more clearly about what’s involved in this journey and to provide you with new perspectives, resources, and connections… All of us are devoted to this sacred space.”

Participating thought leaders were from Australia, Argentina, Brazil, Canada, Costa Rica, Mexico, New Zealand, Puerto Rico, The Netherlands, South Africa, and the U.S. According to Little, there were attendees from 35 countries from outside the U.S.

In addition to the seminars, Little created a public space for one-on-one video chats and personalized advice with physicians, nurses, ombudsmen, social workers, lawyers, scientists, psychologists, music thanatologists, end-of-life doulas, and others.

This historic period with COVID at the forefront, and great numbers of people dying not only alone, but unprepared and without their wishes known, has brought more awareness, reflection, and discussions about dying.

Several folks working with those who are ill, near end-of-life, or working through the aftermath have been collaborating with colleagues in an accelerated way. This expo is one of many gatherings and events on-line since the onset of the virus.

One common theme among presenters and care panels was love – “love in the time of COVID” to borrow from Gabriel Garcia Marquez – providing support in a compassionate, collaborative, gentle, holistic way plus approaches to accomplish this.

Because some presentations overlapped, many worthy presenters and their subjects were not covered. Here a few highlights:

Of note was palliative care physician and gerontologist Karl Steinberg (a speaker at the 2019 expo) whose valuable talk focused on the importance of a relationship with your physician to state emergency, long-term care, and end-of-life wishes ahead of time.  Steinberg is the current Vice President of the National POLST (Physician’s Order for Life Sustaining Treatment – known as a MOLST on the east coast). His expertise also extends to bioethics.

Screen shot of Dr. Karl Steinberg at Beautiful Dying Expo 2020 on-line

Another highlight was the session with Ken Ross, son of Elizabeth-Kubler Ross, the Swiss-American psychiatrist who normalized grief through many books, the most well-known of which is On Death and Dying. That particular book offers a model known as the five stages of grief. Ken Ross, a natural storyteller, was his mother’s caregiver the last 10 years of her life. He is carrying on his mother’s legacy through her worldwide foundation and foreign publication of her books. Ross regaled listeners with stories of travels to 20 countries with his mother.  He clarified that his mother thought grief happened in cycles, and continues – it is not a cut and dry five stages.

The Elizabeth Kubler-Ross Foundation of Mexico, headed up by psychologist and end-of-life doula Wilka Roig, a Puerto Rican by birth, gathered a group of colleagues from other Elizabeth Kubler-Ross chapters around the world – Rodrigo Luz, a psychologist and thanatologist from Brazil, Else Groot-Alberts originally from The Netherlands but residing in New Zealand, Dr. Laura Aresca from Argentina and Uruguay, Wendy Pineda of Guatamala, and Cynthia Frahne a German psychotherapist devoted to palliative care in Argentina.

Screen shot of slide show from Ken Ross of Elizabeth Kubler-Ross Foundation, see Ken in upper left corner under the street sign bearing his motther’s name

Verna Fisher, a social worker, gave an endearing and sensitive talk about how to discover what is unsaid with both patients and families, how to show up for others, and how to listen.

Keith Bradley of Final Exit Network gave a valuable talk about Advanced Health Care Directives for Dementia, and John Tastad, a thought leader in end-of-life ethics, shared about truth-telling in a gentle way.

The closing hour with Brad Wolfe, creator of Reimagine, was especially heart-felt. Wolfe spoke about the death of his cherished grandmother and what it means to love someone all the way to the end of their life. An especially poignant moment was when his father Jim Wolfe joined the talk about this delicate subject.  Reimagine is a platform to reimagine death. It has gathered over 65,000 attendees since its inception to discuss how to embrace life by facing death.  See https://www.letsreimagine.org/about 

Screen shot of Reimagine Founder Brad Wolfe with his father Jim Wolfe discussing delicate subject; Brad sings a song about beautiful dying

I was honored to attend and present at the first Beautiful Dying Expo last year in San Diego which you may read about here:

https://wellnessshepherd.com/2019/12/29/a-visit-to-the-beautiful-dying-expo-in-san-diego-california-2019/

Also see the expo’s Facebook page where you may listen to Michele Little’s informed interviews with some of the speakers.  Scroll down the FB page at

https://www.facebook.com/beautifuldyingexpo

For more information see https://www.beautifuldyingepxo.com, write to info@beautifuldyingexpo.com or call (760)944-7540.

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

2020 Death & Dying Conferences & Education – COVID Has Accelerated Discussions of Mortality

The worldwide “death positive” movement of the last 10 years has encouraged many persons to prepare for their earthly demise – emotionally, physically, spiritually, and legally (addressing healthcare wishes, wills, and more).

The arrival of COVID has accelerated these discussions.

Many gatherings and programs focus on a return to “slow medicine”, person-centered care, traditional ways of honoring departures, the creation or continuation of rituals and all things “natural”.

Who is leading the conversations?

Here below is a random short list (many missing) of conferences and educational resources (mostly in the U.S.) about healthcare, death, dying, and transitions in 2020-2021. Consider it a starter list.

Not included are hundreds of insightful books by caregivers, chaplains, doulas, journalists, nurses, physicians, and lay folks, as well as numerous end-of-life doula programs, local civic community programs, and offerings from hospices, and faith-based organizations.

1001 thanks to all persons near and far who openly share information about mortality and ways to create a thoughtful, peaceful end-of-life for all (when possible) as part of their love mission.

Afterlife Conference  The 10th annual conference, produced by Dr. Terri Daniels, a clinical chaplain, certified trauma professional, and end-of-life educator took place on-line in June. The 2021 conference is scheduled for next June. https://afterlifeconference.com/

Art of Dying Institute at the New York Open Center. On-going seminars plus certificate trainings all year for end-of-life doulas, and dying consciously teachers.  https://www.artofdying.org/

Association for Death Education and Counseling based in Minneapolis, MN cancelled its 42nd annual meeting for 2020. The next conference is scheduled for April 6-10 in Houston, TX. The conference offers continuing education credits and thanatology certifications. See www.adec.org

Authentic Presence  On-going contemplative end-of-life care trainings and meditations led by interdisciplinary palliative care practitioners Kirsten de Leo, and Dr. Anne Allegre. Currently being held on-line. Notable professional education team  https://www.authentic-presence.org/our-team

Beautiful Dying Expo.  On-going end-of-life conversations on their Facebook page with palliative care physicians, hospice nurses, green burial professionals and more. Engaging interviewer is Michele Little, producer, author, and end-of-life doula. The 2020 Expo will be on-line November 13-15. Here is a report on their first expo in 2019: https://wellnessshepherd.com/2019/12/29/a-visit-to-the-beautiful-dying-expo-in-san-diego-california-2019/  www.beautifuldyingexpo.com

Café Mortality, Death Cafes, and Death Over Dinner. Groups around the world started gathering to discuss death over tea and cake in Switzerland in 2002 with sociologist Bernard Crettaz. In September 2011, American Jon Underwood, based in England, carried on the tradition by creating Death Café. Jon died not long ago but his wife, mother, sister, and other volunteers keep the organization going. There are Death Cafes in 79 countries!!! Find one near you or far from you (as most are on-line at this time of COVID) at www.deathcafe.com. Death Over Dinner continues in the same vein with night-time conversations about how we wish to die. See www.deathoverdinner.org. These are all volunteer efforts.

End of Life Experience Conference  March 12-13, 2021 (originally scheduled for April 2020) Lisbon, Portugal  https://www.progressiveconnexions.net/interdisciplinary-projects/health-and-illness/the-end-of-life-experience/conferences/

End of Life University. Dr. Karen Wyatt, an award-winning spiritual care author and hospice physician, started on-line podcast interviews (over 250) with end-of-life professionals in 2013 to offer a resource for family caregivers, healthcare workers, and the public. Dr. Wyatt also creates a book list every year, one book per month, known as The Year of Reading Dangerously. See http://www.eoluniversity.com and

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

End Well Project   www.endwellproject.org  The End Well Symposium is a one-day series of talks every December by esteemed healthcare professionals, most of whom are authors focused on creating more human-centered end-of-life experiences. The 2019 talks may be viewed on You Tube. Here is my blog about the last event.  https://wellnessshepherd.com/2019/12/31/end-well-a-symposium-on-redesigning-the-end-of-life-experience-san-francisco-ca-2019/

Dying for Change Hospice UK offers on-going conferences, workshops, and more.  See https://www.hospiceuk.org/what-we-offer/courses-conferences-and-learning-events

Dying Matters https://www.dyingmatters.org/events  A coalition of National Health Service, non-profit, and the independent healthcare sector in England and Wales. On-going, on-line educational events promoting conversations throughout the kingdom.https://www.conferenceseries.com/palliativecare-meetings   2020

Reimagine  A non-profit organization based in San Francisco that “explores death and celebrates living.” On-going on-line conversations with a diverse group of participants – for example, an interview with palliative care physician Ira Byock, and a group of young Asian-American professionals focusing on how to address the subject of advance healthcare directives with their immigrant parents. For more info see www.letsreimagine.org

The Conversation Project. Boston-based non-profit, co-founded by Ellen Goodman, dedicated to helping folks talk about their wishes for end-of-life care at home and in community settings. Excellent materials (starter kits) to download and work with plus guidance for how to have your end-of-life wishes respected. They have a new COVID-19 specific guide which you may download for free as well as other resources.  www.theconversationproject.org

University of Bath, UK  The Centre for Death and Society, according to Director John Troyer, “is the only research centre that looks at death.”  They held their 14th prestigious international conference in the fall of 2019. Their 2020 conference was cancelled but there are some continuing events including “Big Death Talks”  https://www.bath.ac.uk/research-centres/centre-for-death-society/

University of Wisconsin  International Death, Grief, and Bereavement Conference sponsored by the University of Wisconsin La Cross Center for Death Education, Bioethics, and Extended Learning. June 6-9, 2021  Call for proposals is open for the subject Ambiguous Loss and Grief. https://www.uwlax.edu/ex/dgb/

World Hospice and Palliative Care Alliance  Last but not least, the most meaningful COVID healthcare conversations for me professionally were organized by WHPCA Executive Director Stephen R. Connor, PhD. Connor gathered palliative care professionals from Africa, Asia, Europe, Latin America, and the U.S. to review challenges related to caring, pain management, policy, resources, and serving during COVID. The series was on-line for 12 weeks and included collaboration with the International Association of Hospice and Palliative Care (IAHPC), International Children’s Palliative Care Network (ICPCN), and PALCHASE offering Palliative Care in Humanitarian Aid Situations and Emergencies. WHPCA has over 200 affiliate organizations and members in 79 countries. See https://www.thewhpca.org/covid-19/ for briefing notes and information on participants.

 

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.