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.
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:
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.
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
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.
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.
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.
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
I was honored to attend and present at the first Beautiful Dying Expo last year in San Diego which you may read about here:
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
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.
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 DyingInstitute 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
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 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
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.
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 behindthe 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.
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.
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.
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.comor
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).
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.
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.
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.
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.
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.
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.
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.
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!!
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.
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.
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.
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 Lifecandlelight vigil held at the San LuisObispo 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.
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
While conducting research on health care and end-of-life options for older adults in Mexico, and volunteering at a Guadalajara palliative care hospital and hospice, I have witnessed both expected and unexpected deaths of Americans, Canadians, other foreigners, and Mexicans. In the case of Mexicans, the procedure following death is almost seamless, with rare exception.
The question is, how will you prepare for such a situation if you are not Mexican?
Here is some of what I’ve learned in expat havens from Alamos to Ajijic, Mazatlan to Merida, and Tijuana to Oaxaca:
If you wish to save your family, other loved ones, and your neighbors considerable grief and time, it is important to understand what is involved when a foreigner dies in Mexico, and, to have a plan in place.
This goes for 18-year olds, 40-year olds, and especially for all persons over age 60.
Even though the subject is one many of us prefer to avoid, family and friends back home, as well as your local neighbors, will be grateful if you plan ahead. Planning ahead might even give you peace of mind!
WHAT TO BE AWARE OF
The system of law is different. If you are from Canada, England, or the U.S., you are accustomed to common law, not civil law based on Napoleonic code. The rules governing disposition of human remains in Mexico are not the same as at home. The time and bureaucratic requirements required to negotiate the Mexican system, post-death, can be daunting.
Mexico is a country with predominantly Catholic traditions. These traditions influence choices. If you are Catholic, the system may seem familiar, such as burial over cremation. If you had chosen to live in Buddhist or Hindu Asia, cremation would be a relatively easy matter involving fewer steps as cremation is common practice. Or, you could have opted for a Tibetan sky burial.
The Mexican culture, language, and way of thinking are unique. Most of all, procedures may be unfamiliar and complex.
PREPARING AHEAD FOR YOUR DEMISE & DISPOSITION OF REMAINS IN MEXICO
The key Mexican legal document you need to acquire for best outcomes is a “declaración jurada ” (more or less the equivalent of a living will) stating burial or cremation wishes. This document must be created before your demise. The declaración jurada will almost always insure your plan is followed. It is usually prepared by notaries (notarios). Current costs are approximately 1000 pesos in Jalisco state, for example. Note: powers of attorney (equally important for pre-death and health care complications), and wills regarding your property are separate documents. Once a year, older adults can receive a 50% discount in the month of September for wills relating to property (home, car, jewelry, and other assets).
Note: Some funeral homes offer notarized Letters of Intention for cremation or burial. This, in addition to your declaración jurada, is a somewhat reliable back-up. These funeral homes will give you a card to carry on your person at all times; the card contains your name and other details plus their contact information. Not all funeral homes offer this service.
Your Advance Health Care Directive or Five Wishes from home is not valid in Mexico even if notarized, apostilled and translated into Spanish unless you get lucky.
You are best off incorporating preferences from your Advance Directive or Five Wishes (https://fivewishes.org/) in your Mexican legal document. Most legal documents for foreigners, unless you live in a rural area, are written in Spanish on one half of the page, and English on the other. Again, this is the most important document you can obtain relating to your end-of-life wishes. Note: there is no guarantee your healthcare requests will be honored by doctors, hospitals, and ambulance services, just as in your home country. Your cremation request will be honored if it is in writing and your papers are presented.
Burial in Mexico
Burial in Mexico could be easier than shipping a casket home and less expensive, with one exception. Many cemeteries offer plots for purchase for a set period of time (usually six years) with the understanding that remains will be removed and buried elsewhere at the end of that period. Arrangements must be made in advance for relocation of remains or they may be removed to a communal grave.
Note: There is less and less room at cemeteries in heavily populated areas. According to some city Pantheon (cemetery) directors, families with plots are burying loved ones 10 persons deep.
The population from Chapala to Jocotopec (north Lake Chapala) just south of Guadalajara, for example, is around 100,000, including 20,000 full-time ex-pats (numbers not exact). There are approximately 80+ deaths per year among the ex-pat community according to Chapala’s Registro Civil, Civil Registry office.
Ajijic Cemetery along Lake Chapala serves a population of 10,000. It is full unless a family will sell you a plot there.
Cremation in Mexico
When death occurs in Mexico, local practices will govern how quickly a cremation can take place. In the state of Jalisco burial or cremation must be within 48 hours, or the body must be embalmed. There is one exception – a body can lie up to 30 days in refrigeration (if refrigeration is available and with permission) awaiting family members from out of country to view the remains. Then cremation or interment will take place. Cost for cremation in Jalisco, for example, is approximately 10,500 Mexican pesos; costs for embalming, around 5,000 Mexican pesos.
In Mexico your legal next-of-kin may request cremation or interment if you do not have a notarized living will with end-of-life wishes. It is unwise, however, to depend on good luck or miracles in this situation – again, best to have a Mexican living will.
Some churches in Mexico offer space for cremated remains in an urn or box in a mini-mausoleum setting. Here again, you are usually paying for a specified number of years.
Note: According to a U.S. Consulate web site, “if the deceased is to be transported between states in Mexico for cremation, the body must be embalmed. If the body is to be transported over 100 km a special transit permit is also required.”
By law, a body is to be identified ahead of time. In Guadalajara, for example, no toe tags are used. Photos are taken of faces before the procedure. The name of the person is also written on a ticket. That ticket, serving as I.D., is inserted into a slot space outside the crematory machine.
Shipment of Remains Outside of Mexico
If you are American and wish your ashes or remains sent home, there is another step for a loved one or trusted advocate to complete after all Mexican death-related documents are obtained. (If you are Canadian, see the links in the Resources section below. Canadian procedures are not the same as American procedures). If your body has been cremated, a cremation certificate from the funeral home, an affidavit from the funeral director, and an original copy of the death certificate must be delivered to the nearest Embassy or Consulate. (See U.S. Government 7 FAM 258 DOCUMENTS TO ACCOMPANY REMAINS; these regulations were last updated January 18, 2013). If you die in a small city or rural area and cremation is your preference, understand the expense, effort, and permissions needed to fulfill this requirement.
According to the U.S. government, a consular officer will prepare a consular mortuary certificate to ensure “orderly shipment of remains and facilitate U.S. Customs clearance.” The certificate will be delivered to you in English and it will contain the essential information including cause of death.
As for shipment of remains in a casket, a U.S. consular officer will work to ensure that the Mexican funeral director and American funeral director are in communication to guarantee preparation of remains complies with local, U.S. Department of State, and federal requirements. All corpses going to the U.S. must be embalmed. The shipping time is approximately seven days.
Also note: DHL, Federal Express, and embassy diplomatic pouches cannot be used to ship cremated remains out of the country. There is no customs fee to ship remains to the U.S. Note: Shipment of remains outside of Mexico involves not only high cost, but red tape. Consider buying repatriation of remains insurance.
Other Details to Consider for Smoother Disposition of Remains in Mexico:
Someone to Act on Your Behalf
Are you living alone? If so, do you have at least three friends or neighbors who will follow through with your wishes and instructions if you die in Mexico? Note: Do not depend on legal next-of-kin (spouse) or significant other to represent you. What if you both die in a car accident or other tragedy? It is best to delegate additional persons or a trusted attorney to take charge.
Do you have a working relationship with a medical doctor who can be called immediately by the designated person or persons to declare cause of death and write the death certificate so an autopsy can be avoided? Do not call 911,an ambulance (Cruz Roja or Cruz Verde), the fire department (bomberos), or the police. Call the doctor, obtain the death certificate (Certificado de Defunción – delivered with three copies), then call the funeral home. The copies of the certificate are then delivered to the local Civil Registry (Registro Civil), the Ministry of Public Health, and INEGI (the National Statistics Office).
In places with a number of expatriates, funeral homes sometimes have doctors who can appear if your doctor is on vacation, but most doctors prefer a relationship with you before they will appear and sign a death certificate. Note: If foul play is suspected, an autopsy will be required and the police and fiscalia (the district attorney’s forensics department) will be involved.
Have you selected a funeral service or transporter to collect your body and handle your remains? Using a funeral service is necessary in most of Mexico, unless you are in a remote, rural village where you may be buried in a local cemetery.
Do you want your organs donated? Mexico City’s UNAM, Programa de Donacion de Cuerpo, for example, will welcome your body for science. Are your wishes written in your living will or indicated on your Mexican driver’s license?
Where to Place Remains. Do you wish your remains to stay in country or shipped home?
Someone to Act on Your Behalf, Part 2
Again, designate at least three people to be in charge of your affairs in Mexico in the immediate aftermath of your death. This is recommended based on witnessing situations in Ecuador and Mexico over a period of seven years, and accompanying distressed family members. Your ex-pat friends may travel quite a bit or may not be present at the time.
Do your designees know which funeral service or transporter will collect your body? Do they know where your legal documents (passport, INM immigration green card, living will – specific for cremation or burial, contact info) are and how to pay the funeral home if not pre-paid? Do they know where to locate your bankcard, cash, and/or documents 24/7? Do they have a copy of your keys? Plan on leaving about 20,000 Mexican pesos or more for the certifying doctor, transportation, the funeral company, Civil Registry fees, and cremation so your friends are not left to raise funds.
Copies of Documents. There must be several copies of critical documents – passport, residence card, living will, death certificate, mortuary certificate, affidavit of Mexican funeral director, transit permit, et altri. The person(s) in charge must be told not to offer an original document to transit people, most bureaucrats, etc. – in most instances these entities receive copies.
Death Certificate (Acta de Defunción)
Who will obtain the Mexican government declaration of death with the appropriate stamps from the Civil Registry and the Ministry of Public Health? This is not only a death certificate but an authorization for burial or cremation. Some Mexican funeral homes have experience assisting with these matters, others not. Will your designees need to do it? Best to find out how to obtain the certificate in the state or province where you live so you can leave instructions. (See Resources section below the article with links to information about death certificates in Mexico).
Register Death with Your Country’s Embassy or Consulate
Who will obtain the proper documents from the U.S. Embassy or Consulate, the Canadian Embassy or Consulate, or other foreign government representative in Mexico not only to register the death, but for remains transported home? Some funeral homes are accustomed to offering this service, others not. The embassy or consulate will prepare a Report of Death from the death certificate. Your family member or representative will use this document along with the Mexican documents if or when remains are transported out of Mexico. At the U.S. Consulate you are entitled to 10 to 20 original copies in English.
Spanish language skills are imperative
Depending on English-speaking Mexicans during this process is not advised as they may not be available when you need them. Have someone at the ready who can negotiate procedures in Spanish. There are a number of facilitators, translators, and attorneys who speak English or other languages, best to keep their information handy.
What happens if you die in Mexico, have no spouse, no next-of-kin, no legal documents stating your wishes, and no legal representatives?
Your body will probably be transported to a morgue, usually a SEMEFO (Servicio Médico Forense – Medical Forensic Service) building with refrigeration. Not all SEMEFO buildings have refrigeration or space, even if they have refrigeration. See video links at end of article with tours of SEMEFO in Guadalajara, Mexico City, Sinaloa and the Yucatan. Your country’s representatives will be called. Each country has different procedures for handling such situations. Your body will probably be autopsied. Often, if no one claims your body, your remains will be placed in a communal grave in Mexico. Each state of Mexico and each rural area has different traditions and preferences.
Few people know where they will die or when. If you spend time in Mexico, or any Latin American country with deeply Catholic traditions, where family ties and support reign (i.e. you will be rescued and your loved ones will know what to do), as well as strict codes and preferences that may not be yours, please choose to prepare yourself.
Preparation hint: register your whereabouts and family contact information with your embassy or consulate The U.S. government, for example, has an excellent system for Americans at https://step.state.gov/. It is the Smart Traveler Enrollment Program and advises you of security risks in the place where you are living and assists with connecting family and others to you in case of emergency. Other places to register your emergency information are located in expat communities around the country. The registries are usually announced in local directories, magazines, English-language newspapers, or found by word-of-mouth. Some non-profit expat organizations provide registries as do churches and synagogues with English-speaking congregations.
End-of-Life Planning is critical for expats.
Create peace of mind for yourself, your loved ones, and your neighbors.
Note: Preparing medical directives for healthcare emergencies, and preparing wills, are subjects worthy of their own long articles and are not included above.
Note two: Physicians, funeral directors, cemetery directors, city and province officials (including a district attorney forensics office), one attorney, one notary, and a consulate were consulted with or interviewed in Mexico for this article.
Note three: If you are alone with no spouse, no children, and no one to rescue you, it is suggested you carry a copy of the funeral home card with contact information on you, plus a copy of key contacts including the notary public. When traveling, also carry a copy of your declaración jurada. If you have a car, it is recommended you keep a copy of your declaración jurada in the glove compartment.
Wendy Jane Carrel, MA, is a Spanish-speaking senior care specialist from California. Over a period of several years she has traveled state to state in Mexico researching senior care options. She volunteers at the only 24/7 palliative care hospital/hospice in Jalisco which also has a community outreach service. She has investigated, studied, and negotiated health systems, senior care options, end-of-life care and planning, and, disposition of remains in Mexico. See http://www.WellnessShepherd.com or contact her at email@example.com .
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https://wdef.com/2018/09/19/morgue-director-fired-over-stench-of-157-corpses-in-truck/ September 2018 article reporting on two tractor trailers filled with unidentified corpses as there is not enough refrigerated space at the morgue in Guadalajara. A report by the English-language Guadalajara Reporter stated that corpses of two unrelated Americans, who died of natural causes, were stored in the tractor trailers, an indication that some stored corpses were identified first, not that it makes being stored in a tractor trailer palpable.
https://www.youtube.com/watch?v=kWNr53cWfxk Sinaloa SEMEFO, a report in Spanish about abandoned corpses and no refrigeration 2016, “muerte indigna.” Apparently a new building has been constructed since with refrigeration. Note: in places of extreme humidity and heat with no refrigeration, imagine the stench.
https://www.youtube.com/watch?v=5fNXN6XycPA According to the video, “drug dealer” tombs in Sinaloa represent the opposite kind of ending from an abandoned body left at the morgue. The Jardines de Humaya cemetery in Culiacán, Sinaloa, is known for its extravagant mausoleums, not all that dissimilar from the concept of the Mamluk tombs in Cairo Egypt’s City of the Dead (circa 642 AD). The video shows the tomb of Ignacio Coronel that apparently cost millions of pesos or dollars.
https://www.youtube.com/watch?v=B-mHof2axB4 According to this 2017 documentary video from Mexico City, if after three weeks no one identifies a body, it will usually end up in a communal grave. In another report, some bodies may go to a medical school for study.
https://tomzap.com/dying.html Dying in Puerto Escondido, Oaxaca, a 2013 report. At that time it was estimated one needed about 12,000 pesos to pay for cremation, now transportation and cremation will come to around 20,000 pesos, depending on the funeral home.