Category: Death and Dying Education

Death and Dying, Death and Dying Conferences, Death and Dying Education

Beautiful Dying Expo 2021 Gathers Participants from 45 Countries On-line

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“Navigating through Life’s Journey” was the theme for the 3rd annual Beautiful Dying Expo November 12-14 on-line produced by author and end-of-life doula Michele Little and co-produced by Christy Marie.

Over 1300 registrants logged in from 45 countries on five continents to learn or share about quality of life, palliative care, hospice, death, dying, green burial, grief, and more.

Not surprisingly most of the speakers who devote themselves to death and dying education have come to the space as a result of personal experiences with death – physicians, nurses, end-of-life doulas, psychologists, social workers, chaplains, family members, policy makers, and more.

There were many tender moments as well as offerings of humor, healing, practical action plans, and revelation. For many attendees the expo went by far too fast. Over 50 useful talks and exchanges included, among other subjects, how to write a holographic will and why (a holographic will is legal), Latin American perspectives on death, pediatric palliative care, surviving suicide, and veteran burial benefits. There were Death Cafes and a Sudden Widow Coach. Much to choose from!!!

“The timing for our exploration couldn’t have been more perfectly aligned as the past two years have impacted all of us and made us more aware of how precious life is,” stated producer Little.

“We needed a place we could go to find answers for our deep, unspoken questions about dying, death and grief. We needed to know it was okay to live, love, and be in joy.”

There were many highlights but one stand-out (I admit to bias because I know them), was the presentation by Rev. Dr. Saul Ebema and his after chat with producer Michele Little. Ebema survived the south Sudanese war and time as a child soldier to eventually become a hospice chaplain in the U.S. Little’s brother David was a NYC firefighter who lost his life trying to save others on 9/11 in one of the twin towers. His remains were never found. These two sentient beings talked about love, loss, the mysteries of death, and the sacredness of life. It was moving to listen to.

Rev. Ebema’s PTSD from witnessing the unmerciful deaths of his parents, his only brother, and the war still lingers. “I longed for a sense of community, for people to talk to, for people you can dream with, and tried to figure out this thing called life.”

Rev. Ebema reminded the audience that “life is a practice”, “grief and joy can co-exist”, and “being kind saves lives.”

Rev Dr. Saul Ebema is the president and founder of Hospice Chaplaincy. He founded and co-hosts “The Hospice Chaplaincy Show” a podcast about compassion and the psychosocial/spiritual aspects of end-of-life care. See https://hospicechaplaincy.com

Rev. Dr. Saul Ebema of Hospice Chaplaincy

Other speakers among the many (apologies to the amazing guests whom I was unable to listen to, thank you for your contributions):

The main presenter on the first morning was Gary Mallkin, a heart-centered, award-winning musician (20 Emmys) who shared how music may support us as we journey gently through grief. Music for Malkin is “innertainment”. “Everything is vibration and has intention, it can shift our attention, hearing is the last sense to go.” From Malkin’s point of view, “the most successful pharmaceutical would be a pill with music, music as medicine.” His website, featuring many spiritual luminaries may be found at www.wisdomoftheworld.com

Althea Halchuk, a Board-Certified Patient Advocate (BCPA) specializing in health law and founder of End Well Patient Advocacy gave an exceptionally articulate and important talk about Medical Surrogacy – who is going to speak for you if you become incapacitated. This is a subject that should be of interest to everyone, especially people who live alone, have no children, no spouse, no significant other, and no support system. Halchuk is also an advocate for Final Exit Network. She is based in Arizona. https://endingwellpatientadvocacy.com/

Dr. Mitsuo Tumita moderated a talk with Julie Stroud (now an End-of-Life Option Advocate) who witnessed medical aid in dying (MAID) for her father, and Joanne Kelley (now an author, INELDA End-of-Life Doula and End-of-Life Option advocate) who reluctantly witnessed her husband’s transition. They reiterated that no matter how you feel, i.e. you do not agree, you do not want your loved one to die, the dying person’s wishes must be front and center. They spoke of stigma attached to MAID, as well as “how MAID is often mixed up with suicide.”

Arlene Stepputat, a death educator and end-of-life doula from Santa Barbara, CA spoke about “Doulas at the Bedside” based on her experiences companioning over 20 folks on their journeys. “Bedside practice is the best teacher.” Arlene can be found at https://dyingtobegreen.com/resources/divine-doulas/

There were panels of End-of-Life Doulas as well as a presentation by Dr. Jamie Eaddy Chism, Founder of Thoughtful Transitions and INELDA (International End-of-Life Doula Association) Director of Program Development. Chism is devoted to black end-of-life care. See (https://www.thoughtfultransitions.org). Doula discussions included mention of gradual acceptance of their purpose (non-medical) in hospital ICUs, hospices, and private homes.

Author and radio personality Jane Asher hosted “In the Next Room” podcasts. On-line meet-ups in “rooms”, interaction during sessions also included write-in chats in the side bar. A myriad of multi-lingual panels (English/Spanish/Portuguese) were hosted by Wilka Roig of the Elizabeth Kubler-Ross Foundation Central Mexico. A blog about transpersonal psychologist Roig and her death education initiatives in Mexico may be found here https://wellnessshepherd.com/2021/04/30/end-of-life-education-and-end-of-life-doula-training-takes-off-in-san-miguel-de-allende-mexico/

Palliative care physician and gerontologist Karl Steinberg (a speaker at the 2019 and 2020 expos) focused his talk (missed this event) on the importance of bioethics in end-of-life care and also addressed the current controversy about the value of having an Advance Care Plan. 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).

Ben Janzen, Dr. Theology, PhD, Grief Release Method specialist, Hospice Chaplain, and VITAS Bereavement Counselor, also a speaker in 2019 and 2020, gave a talk which I missed. He also participated in a panel discussion on grief.

Canadian Yvonne Heath of Love Your Life to Death and TedX speaker explored the concept of a joyful death with American physician and comedian Patch Adams. Yes, he is the person portrayed by Robin Williams in a movie with his name.

Terri Daniel, an interfaith chaplain, end-of-life educator, and grief counselor created a spiritual ritual for the opening and closing ceremonies. Daniel is the producer of the original After Life Conference (11th year), producer of the Conference on Death, Grief, and Belief (July 2022), host of Ask Doctor Death podcast.  See https://danieldirect.net/

Producer-director Gay Gillingham of Dying to Know, a documentary created over several years of conversations between former Harvard psychology professors Ram Das (Richard Alpert) and Timothy Leary about the meaning of life and death, offered her film as the closing night gift. A link to the trailer and the movie may be found here: https://dyingtoknowmovie.com/

The 2022 Beautiful Dying Expo is scheduled for November 11-13. More information may be found at www.BeautifulDyingExpo.com as well as on the expo Facebook page which features Michelle Little’s interviews with guests dedicated to death, dying, and grief education.

For a review of Beautiful Dying Expo 2020 see https://wellnessshepherd.com/2020/12/31/beautiful-dying-expo-2020-death-and-dying-colleagues-from-10-countries-advocate-for-thoughtful-preparation-and-planning-for-ones-demise/   

A review of Beautiful Dying Expo 2019 is here: https://wellnessshepherd.com/2019/12/29/a-visit-to-the-beautiful-dying-expo-in-san-diego-california-2019/

The Beautiful Dying Expo is a non-profit project of the Institute on Violence, Abuse and Trauma, (IVAT). IVAT has been the fiscal sponsor since inception. The expo is organized by volunteers who, states producer Little, “wish to continue to build healthy communities globally.“

Wendy Jane Carrel, MA, is a Spanish-speaking senior care specialist and consultant from California. She has travelled Mexico for several years researching health systems, housing, senior care, and end-of-life care in order to connect Americans, Canadians, and Europeans with options for loved ones. She has investigated hundreds of senior living choices in 16 Mexican states. Her web site is http://www.WellnessShepherd.com

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End-of-Life Education and End-of-Life Doula Training Take Off in San Miguel de Allende, Mexico

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Over the last 20 years, in Europe and most English-speaking countries, there has been a rise in the interest of death and dying education and related issues. There has also been more focus on a return to person and family-centered care that existed before modern medicine and continual interventions.

Even though Mexico’s Day of the Dead is dedicated to celebrating one’s ancestors every November 1 and 2, and family tradition is to be at home with the dying, there is a movement for more community outreach, open discussion of the subject, and a return to indigenous wisdom which may complement current customs.

U.S. educated transpersonal psychologist Wilka Roig, a Puerto Rican based in San Miguel de Allende, Mexico, founded the Elisabeth Kubler-Ross Foundation of Central Mexico in 2019 to meet this growing need.   

“Whatever we can do to shift the paradigm, normalizing death, normalizing grief, that’s our mission,” comments Roig.

The Elisabeth Kübler-Ross Foundation in Mexico is a non-profit organization inspired by the work of Swiss psychiatrist, humanitarian and hospice pioneer, Dr. Elisabeth Kübler-Ross. Kubler-Ross’ seminal books (23) have been translated into more than 35 languages. On Death and Dying is her best known title (1969).

To meet the growing interest Roig hosts seminars (currently Zoom gatherings on-line in English, Spanish, and Portuguese) about serious illness, compassionate care, models of hospice care, green burials (Roig is dedicated to establishing a model in Guanajuato state), loss, grief, and more. The umbrella title is “Preparing for a Thoughtful Death” or “Preparandonos para una Muerte Cosciente” in Spanish.

Recent seminars have featured Ken Ross, Founder and President of the Elisabeth Kubler-Ross Foundation, and Dr. Christopher Kerr of Hospice and Palliative Care Buffalo, author of Death is But a Dream.

Dr. Christopher Kerr, Wilka Roig, MA April 21, 2021

Roig also hosts Death Cafes, Death Over Dinner discussions, and trains end-of-life doulas (non-medical professionals trained to care for psychosocial and spiritual needs of seriously ill patients and their families during and after the death process).

Roig is an end-of-life doula certified through INELDA, the International End-of-Life Doula Association based in New Jersey. Roig’s work as a doula is all volunteer.

According to Roig, she has been “accidentally” moving toward this work since childhood. “I’ve been listening, connecting, dreaming, embracing dying and loss, noting how the influence of the dearly departed is healing. Any work we do to be in touch with ourselves is end-of-life work,” adds Roig.

Since the beginning of time doulas, known as parteras (midwives), have been present in Mexico for births and deaths. There is a lineage of grandmothers, mothers, and daughters who do this work throughout the country. In many areas, where superstition reigns, end-of-life doulas are not spoken of, as they are sometimes associated with witchcraft.

During the pandemic Roig created an on-line 14-week doula course to teach compassionate accompaniment. She envisions community care that “encompasses teaching gardeners and housekeepers in different towns and states of Mexico how to be doulas and/or support end-of-life.”

Last year Roig trained doulas for Hola Hospice in Morelia, Michoacan. See article here:

Mexican-American Nurse Elena Lopez Opens First Residential Hospice in Morelia, Michoacan, Mexico

Roig currently has three doulas in practicums.

“The Elisabeth Kubler-Ross Foundation is now an official place to begin the support of community death care in Mexico,” says Roig. Roig is moving closer to her goal of normalizing death and grief one person at a time.

Resources:

https://en.wikipedia.org/wiki/Day_of_the_Dead

https://edition.cnn.com/2021/03/09/us/death-doula-covid-trnd/index.html

http://www.nedalliance.org/uploads/1/0/9/9/109917739/thoughts_on_the_end_of_life_doula_movement.pdf

About EKRF México Centro
Home

Wendy Jane Carrel, MA, is a Spanish-speaking senior care specialist and consultant from California. She has travelled Mexico for several years researching health systems, senior care, and end-of-life care in order to connect Americans, Canadians, and Europeans with options for loved ones. She has investigated hundreds of senior housing choices in 16 Mexican states. Her web site is http://www.WellnessShepherd.com

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

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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 Education, End-of-Life Education, End-of-Life Planning, Palliative Care

Palliative Care and End of Life Practitioners Gather Internationally and Locally Seeking Solutions for COVID Care, Social Disparities, and More

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COVID has brought about loss of lives, economies, and untold devastation around the world.

It has also brought with it dedicated palliative care and end of life practitioners gathering for discussions about  how to improve healthcare inequities and offer psycho-social-spiritual support to patients, families, medical teams, and first responders for now and the future.

New alliances and friendships have been formed via Facebook, Webinar, and Zoom chats that may not have been forged otherwise.

In August 2020, I attended several gatherings. Below are highlights. Each exchange was a gift.

The Chaplaincy Innovation Lab lead by Wendy Cadge and Michael Skaggs at Brandeis University continues to host a remarkable gathering of chaplains and others. The Trauma and Spiritual Care meeting in August emphasized the value of chaplaincy during COVID.  We listened to moving stories about trauma created by the current medical model, especially for minorities, and the statement “racism is a public health crisis.”  Also of note were observations by Dr. Ayo Yetunde, a professor at United Theological Center of the Twin Cities, who focused her remarks on the trauma and stigmatization of growing up black in America. She spoke about moral injury and how “politicians traumatize us.”  Her newest book, to be released this fall is Black and Buddhist.  See https://www.unitedseminary.edu/academics/faculty/pamela-ayo-yetunde/ and http://chaplaincyinnovation.org/

The Elizabeth Kubler-Ross Foundation of Central Mexico.  Psychologist and end-of-life educator Wilka Roig in San Miguel de Allende produces monthly seminars related to death, dying, and grief. The August gathering was uncommonly interesting with Ken Ross, son of Dr. Elizabeth Kubler-Ross, as the guest. It was fascinating to learn about his mother, the Swiss doctor who spent her adult life in the U.S. devoted to continuing the hospice movement started by her friend and colleague Dame Cicely Saunders of St. Christopher’s Hospice, London. I have visited the Elizabeth Kubler-Ross library in Torrance, California at Dr. Ira Byock’s Institute of Human Caring but had no idea of the trials and tribulations of this remarkable woman’s life. Dr. Kubler-Ross was a Jungian, and a prolific author best known for Death and Dying, 1969. Ken was her caregiver for almost 10 years. He gave a loving, tender report that included amusing stories about how stubborn she could be. A revealing part of his talk was how most people interpret the five stages of dying or the five stages of grief literally, as fixed stages. He showed us circular graphs his mother created showing all phases are connected and that we go in and out of phases arbitrarily. There is no end.

Dr. Marcos Gomez Sancho, the pre-eminent thought leader for palliative care in the Latin world spoke on Facebook to over 700 physicians, nurses, social workers, psychologists, educators, and volunteers in North and South America from his home in Palma de Majorca, Spain. As anticipated his talk was well-planned and included music, paintings, and photos to illustrate his points. His presentation was “El Duelo Normal al Duelo Imposible”, normal grief to impossible grief, emphasizing “the cruelty” of dying alone without traditional support and the suffering of the patient, the family, and the medical team. Dr. Gomez’ website is: http://www.mgomezsancho.com/esp/index.php

I was honored to spend time with Dr. Gomez at the 2nd International Palliative Care Conference in Guadalajara in 2015 and last year when he was again the headliner at the 4th conference: https://wellnessshepherd.com/tag/dr-marcos-gomez-sancho/

Dr. Marcos Gomez Sancho, 2 August 2020

The National Association of Hindu Chaplains (NAHCA) A unique gathering of mostly Hindu Americans (14) with special guest Sanjay Mathur of the Hindu Temple of Rochester, NY. Moving stories by this tender-hearted man with compassionate presence. I could see why anyone would feel comfortable receiving his pastoral care. http://www.hindutempleofrochester.com/

Let’s Reimagine End of Life, based in San Francisco, has put a tremendous amount of energy into producing 700 “spaces” around the world, and 125 workshops. Congratulations to programmer Dara Kosberg. One of my favorite discussions included a small group of first generation Americans of Chinese, East Indian, Korean, and Thai descent discussing how to talk to their parents about planning end of life, a culturally taboo subject. On August 31, founder Brad Wolfe, a Stanford educated entrepreneur and artist hosted a chat with palliative care physician Jessica Zitter (also author and filmmaker), Pastor Corey Kennard, and grief author Hope Edelman. I loved the breakout sessions where a marvelous synchronicity introduced me to Jessica’s lovely mother Rhoda, and two colleagues whom I hope to stay in touch with – international end-of-life doulas Glynis German of Mallorca, Spain and Merilynne Rush, RN of Michigan. They both also host Death Cafes. Small, meaningful world.  https://letsreimagine.org/

Heartfelt thanks to all those mentioned above who dedicate their lives to the well-being of others, and who are so willing to share what they’ve learned.  And heartfelt thanks to all others engaged in these activities and are not mentioned.

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

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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.

 

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

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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

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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 Education, End-of-Life Education, End-of-Life Planning, Palliative Care

Author Katy Butler Talks about Medical Reform for End-of-Life with Healthcare Workers in San Francisco

bigpondlittlegirl

In early November, New York Times best-selling author (Knocking on Heaven’s Door) Katy Butler gave a talk focused on themes from her new 2019 book The Art of Dying Well at Sutter Health CPMC in San Francisco. Approximately 100 healthcare workers participated.

I was fortunate enough to attend and briefly meet Katy and her husband Brian, also active in humanitarian and senior care issues.

The event gave Butler a chance to share compelling, medically complicated personal stories relating to the passing of her parents and friends. She also spoke about her commitment to compassionate care and the human right to die with dignity and grace when possible.

Katy Butler reading from her book THE ART OF DYING WELL

I found what she had to say authentic, heartfelt, and practical… especially her reminders that a good many of us working in senior care and palliative care find imperative to share with others – make a plan for end-of-life if you haven’t already, find your tribe (who will be there for you, presuming your demise is not sudden), stay in charge (ask for what you want and need), and “bring in the sacred.”

Katy hosts a Facebook group entitled Slow Medicine, based on principles in the book of the same name by her Bay Area colleague and friend Dr. Victoria Sweet, calling for change in medical practices. Quality of life over invasive and perhaps unnecessary procedures, especially at end-of-life.

Notable aside: Butler, a Buddhist, was lay-ordained by Thich Nhat Hanh, Vietnamese monk and peace activist. She lived seven months at his Plum Village retreat in France, among other significant life experiences.

See http://www.katybutler.com/author/about/

The evening was part of an on-going lecture series from Ungerleider Palliative Care, a non-profit affiliated with End Well.

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

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

bigpondlittlegirl

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/

Caregivers, Death and Dying, Death and Dying Education, End-of-Life Care, End-of-Life Education, Hospice

All Volunteer Hospice of San Luis Obispo County Sustainable for 41 Years

bigpondlittlegirl

For the last few years I have had the good fortune to visit palliative care and hospice entities in California as well as in six states of Mexico with the objective of learning more about what works, what’s missing, and what might work in Mexico for years to come. There are challenges based on cultural differences, but all is possible.

I am comparing various models – hospitals and facilities (medical), in-home community outreach (medical and/or volunteer), all volunteer, government, non-profit, and for profit.

Hospice of San Luis Obispo County (HSLO) has been on my radar for some time because it is a successful, locally based non-profit volunteer hospice that has sustained itself for 41 years!! For those of you who are familiar with the operations of non-profits, this is an extraordinary achievement.

Aside from serving the public, HSLO educates and trains locals and others as end-of-life doulas (companions). They host Death Cafes and much more.

The sustainability is based on more than dedication and love – mainly inventive ways to engage the public, an especially hard task in a difficult economy.

Hospice of San Luis Obispo County, California office

I am so pleased I was finally able to visit HSLO. I am indebted to the Executive Director and the Director of Volunteers, the few paid staff, for a warm, meaningful, memorable exchange.

HSLO is one of six hospice services in a county with a population of around 284,000. It is the only volunteer in-home hospice supported by the generous energy of over 200 volunteers. They serve approximately 5,000 persons per year.

Any county resident with life-limiting illness is served through “in-home respite care, emotional, spiritual, practical and non-medical support, and grief counseling support (group and individual).”

Other services are education about dying and death for professionals, caregivers and the community, doula programs, Death Cafes, Threshold Choirs, and Pet Peace of Mind groups.

From my perspective their outreach and activities place HSLO in the vanguard of the “death care and the death positive” movement that is sweeping North America and beyond.  It is exhausting but rewarding work.

Additional treat: I was blessed to attend HSLO’s annual Light Up A Life candlelight vigil held at the San Luis Obispo Mission on a nippy, rainy evening. Names of those who have passed were read out loud during the hour service that included a choir. Later we carried candles outside for readings and prayers.

Light Up A Life Candlelight Vigirl, San Luis Obispo Mission, California

Anyone may pay a fee (fundraising) to have the name or names of loved ones read at Light Up A Life. This lovely event is repeated during one week in December in different cities of the county.

HSLO was created in 1977 and has an excellent reputation through word-of-mouth.

Services are provided without charge; no insurance company is billed. 

HSLO relies on community donations, fundraising events, grants, doula training fees, and the time of its over 200 volunteers.

Hospice of San Luis Obispo County is a remarkable operation.  So much goodwill!!  A great gift to the community.

The home which serves as office was bequeathed to HSLO by Dorothy D. Rupe; it bears her name.

1304 Pacific Street, San Luis Obispo,CA  93401  tel. (805)544-2266

http://www.hospiceslo.org/

HSLO is a member of the Better Business Bureau and is a Top Rated Non-Profit.