Category: Palliative Care

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

bigpondlittlegirl

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

bigpondlittlegirl

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

The arrival of COVID has accelerated these discussions.

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

Who is leading the conversations?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

bigpondlittlegirl

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

bigpondlittlegirl

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.

Hospice Physician Karen Wyatt
Death and Dying, Death and Dying Education, End-of-Life Care, End-of-Life Education, End-of-Life Planning, Health & Wellness Mexico, Hospice, Palliative Care

Death & Dying Education – A Chat with End-of-Life University’s Karen Wyatt, MD

bigpondlittlegirl

Award-winning author, podcast host, and hospice physician Karen Wyatt connects healthcare professionals and the public with information about healing options for the dying through End of Life University, which she founded in 2013.

Backstory:

For three years+ I have been dedicated to a palliative care/hospice mission for Mexico. Even though I am back and forth to California, I am continually on the look-out for how care and support for patients and families is being provided on a national and global basis.

What interests me are differences place to place as they relate to education for providers, physicians, patients, and families – what’s missing, what’s working, what options and perceptions about dying are offered. 

This is where Colorado-based hospice physician and thought leader Karen Wyatt comes in. She brings my quest to my computer in an open and engaging way through her END OF LIFE UNIVERSITY web site podcasts. Colleagues share experiences, feelings, information and wisdom about how they are advancing best practices for end-of-life.

Dr. Wyatt’s approach to death and dying is holistic, with a special emphasis on sacred and spiritual aspects of our transitions. 

The goal of her effort is a national dialogue for “creative healing… opening the heart of Western medicine.”  The podcasts, connections, and resources are a welcome gift not only for healthcare professionals but the public as well.  See www.EOLUniversity.com.

In conjunction with the university, Dr. Wyatt launched an on-line book club in January 2018, The Year of Reading Dangerously, where she introduces one book per month about an aspect of end-of-life, and, interviews the book’s authors live on-line. Participants type in questions on-line or ask via the phone line they are listening on.

 

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

Interview with Dr. Wyatt

Please share with us about your personal history, and, what led to your work in end-of-life care.

I trained to be a family doctor. I had no knowledge of death and dying or hospice.

Three years after my residency, my father died by suicide. His sudden death upended my world. I felt guilty. I had training in psychiatry and couldn’t save my dad. I floundered for a long, long time trying to get through the grief. Three years after his death, I still felt very lost. I was wondering if I would ever smile or feel joy again. Suddenly a voice said, “call hospice.”  It was my voice, and I have no idea where the message came from.

I didn’t even know if there was a hospice in the Utah community I lived in. I searched “hospice” and found one. I called and asked if they needed a volunteer. When they discovered I am a doctor they enthusiastically exclaimed “oh my goodness!” The Hospice Director, stunned, continued to ask “what made you call us now?” I just had an inspiration, I replied. The Director continued, “Our medical director resigned 30 minutes ago and now you’ve called us.” Just like that I became a hospice medical director. I was guided to this place, and I knew it for sure when I met the team.

What inspired the creation of End-of-Life University?  What led you to gather fellow end-of-life colleagues to share what they know with each other and the public? 

Years in hospice have brought me profound spiritual experiences. I have learned many lessons about how to live my own life. Hospice has helped me live a life of appreciation and that brought me to the decision to write a book.  Many patients had asked if I could tell their stories one day. I made a promise to do so.

 

End-of-Life Book
by Karen M. Wyatt, MD

Writing a book was a long process and is what probably inspired the eventual creation of EOL University. I began the book in 1999 and finished in 2010. I felt I must live the lessons of the book in order for it to be complete. The book was published in 2012 and it was then I realized for the first time that the population, in general, was resistant to talking about death and dying. It seemed people were not ready or open; it was the last thing they wanted to talk about. It was then I knew I wished to do something to change this, something different needed to happen.

Brainstorming led to the question, what else may I be involved with other than a blog or writing? (At the time, Wyatt was posting occasional articles on Huffington Post and in local newspapers). The year was 2013 and I began listening to on-line interviews on other subjects and realized no one was doing this on-line for death and dying. I started the research to find people to interview. It was fun, I loved it (and still do). I was learning so much and wished to keep it going. That was five years ago. I am grateful to the Internet and social media as networks for good.

What response did you receive when you first began End-of-Life University?

End-of-Life University is always a work-in-progress, unfolding. In the beginning I felt no one was listening to the interviews, and that no one cared. The interest grew slowly over time. I learned consistency is important, showing up regularly.  I followed the top web sites in Google search. I recognized ranking makes a difference. Over the years EOL University has gone from 200 to 4,000 subscribers. There is a lot of patience on my part.

I knew I was in it for the long haul, and it was the right thing to do whether I received validation for it or not. In the last couple years, whenever I’ve been at a conference, I kept meeting people who have been listening to the podcasts.  Some would say, “every week, your interviews got me through two terrible years when my mother died, or “I’m interested in working in end of life because of your podcasts.”  One of most important things I learned is that your heart tells you to continue, even if there are signs showing otherwise.  You don’t know the impact you are making, but someday you may find out. Always trust your heart. 

How did the concept of creating the book club with its engaging title, the Year of Reading Dangerously, take hold?

 I felt it would be important. There are so many books, and books are another wonderful way people can learn about death and dying. The goal is to reach people.  The concept of reading and discussing a different book each month had been with me for a while. So late one night I posted the book club on Facebook to see if there might be any interest. I was imagining maybe 20 persons might respond, and if so, that would be great. Well 150 had signed up! Now over 1,000 have signed up.  It’s never too late to join. The response has been so positive I am thinking about continuing the book club in 2019.

What I like most about the club are diverse points of view, completely different voices with unique perspectives discussing end-of-life. I owned some of the books and hadn’t read them yet. Some of the authors I had invited to talk about their books suggested others. Katy Butler, author of Knocking on Heaven’s Door: The Path to a Better Way of Death, suggested Megory Anderson’s book Sacred Dying: Creating Rituals for Embracing the End of Life. Ken Wilbur is a friend and I felt his story Grace and Grit would be compelling.

I find a lot of our listeners are going through their own personal struggles related to death and dying. It seems energetically powerful and perhaps healing if people around the world are reading the same books. There is something enormously attractive about bringing people a shared body of useful knowledge.

See https://www.eoluniversity.com/yearofreading

Dr. Wyatt has retired from her medical practice. Her focus is end-of-life education. She enjoys speaking to audiences across the U.S. and has discovered that “threads” connecting those who do this work remain strong. “Death has called us in and somehow we end up sharing our experiences with others,” she says.

The “death positive” movement has taken off in recent years. Dr. Wyatt’s End-of-Life University and her podcasts seem to be at the right place at the right time.

It was almost 20 years ago when Bill Moyers’ PBS series ON OUR OWN TERMS showed that those of us who tend to the dying wish “to assure patients they can have a ‘good death’ one that fits them, their families, and their culture.”  This is Dr. Wyatt’s mission as well. More people are now receiving the message.

 

Thought: What do you wish for your end-of-life?

Links where you can learn more or support the non-profit, all volunteer End-of-Life University:

www.karenwyattmd.com

www.eolu.com

www.patreon.com/eolu    donations to non-profit End-of-Life University

https://www.amazon.com/What-Really-Matters-Lessons-Stories/dp/0982685548/  link to Dr. Wyatt’s award-winning book

Death and Dying, End-of-Life Care, Health & Wellness Mexico, Humanitarian Rescue Older Adults, Mexico, Pain, Palliative Care, Palliative Care Mexico

Mexican Palliative Care Team Juntos Contra el Dolor Conducts Medical Mission in Remote Oaxaca State

bigpondlittlegirl

Juntos Contra el Dolor, A.C., the only 24/7 palliative care and hospice service in the state of Jalisco, Mexico, leads a yearly (sometimes twice yearly) medical and humanitarian mission to assist the Mazateca (people of the deer) in remote mountain communities of Oaxaca state. The team is led by Juntos founder Dr. Susana Lua Nava, a thought leader in palliative care and hospice.

Palliative care in Mexico is generally provided by a team of doctors, nurses, social workers, psychologists, chaplains, and trained volunteers with the goal of relieving pain and creating a comfortable existence for patients physically, emotionally, and spiritually. An important part of the work is the educational component for families and caregivers. Hospice is an extension of palliative care for end-of-life.

This year a group of 13 Jalisco volunteers (two physicians, nurses, social workers, a nutritionist, and trained palliative care missionaries) drove from Guadalajara in a rented white van to the high Sierras of Oaxaca in southern Mexico. The trip took 14 hours. After arrival, they spent the night in a local church in Huautla de Jimenez, population approximately 32,000.  (See references and You Tube videos below for more info).

Juntos Contra el Dolor Medican Mission to Oaxaca
Juntos Contra el Dolor, A.C. palliative care team on humanitarian mission during Easter holiday to Oaxaca; man in red is Sr. Obispo Armando of Huautla di Jimenez; Dra Susana Lua Nava is in khaki vest; the woman on the far right holding palm fronds is a Huautla physician
Local Environment

Each day for nine days the team, divided into three groups, walked and climbed footpaths to families in the areas of San Andres Hidalgo, Chilchitlan, San Antonio, and Santa Carlota. Dwellings of each family are about an acre or more apart, sometimes kilometers apart.

There is no running water in the dwellings. There is no electricity except in rare instances. There is no natural gas. Wood is used inside homes and exposure to smoke can lead to respiratory illnesses. Some families do not have shoes.

The Mazateca homes, people, and clothing are clean and tidy. Personal hygiene is conducted with soap and small plastic bassinets of water.

“Although the trips are physically exhausting,” recounts missionary German Maria Becercil of Guadalajara, “they are an excellent reminder of how much I have and am grateful for – hot water, a refrigerator, a stove, and most of all my health.”

What was immediately noticeable to nutritionist Jorge Gonzalez Gonzalez of Tepatitlan, Jalisco, was the lack of food. Not enough food. This scarcity, he says, can lead to digestive illnesses – gastritis, colitis, stomach ulcers, pernicious anemia, and pyrosis (heartburn).  “Poor nutrition,” he continues, “also leads to low weight and low height, and metabolic illnesses such as diabetes and hypertension.” The mission hiked in with bags of food staples for the ill and their families.
Nutritionist Jorge Gonzalez w/Young Patient
Nutritionist Jorge Gonzalez Gonzalez with young Mazateca patient

Mazateca tradition of shamanic healing

The Mazateca culture holds unique health beliefs.

When illness strikes, they follow a tradition of shamanic healing with the use of “magic mushrooms” or salvia divinorum (a green paste made from a plant), mixed with cosmology and some Catholicism (altars, candles, and prayers). The ill person is usually laid on the ground over blanket-covered wooden slats.

The man in the photo below was thought to be dying of extreme stomach pain. His family placed the salvia (the green paste) on his head. It turned out he had a curable condition – ulcers – and the team was able to assist his healing.

Missionary German
Missionary German Becercil (in yellow) attending an elderly man whom he found with green salvia (Mazateca natural medicine) on his forehead

There is a general lack of knowledge among Mazatecas about many illnesses, especially cancer. There are no modern communications systems in rural areas. Few Mazatecas read or write. There are rarely funds to consult with a physician in Huautla, or to pay for medicine.  “The situation is hard for these appreciative and kind people. Without access they just get sicker,” comments missionary German.

The Juntos Contra el Dolor team is Catholic yet ecumenical. The team honors and works with traditions and belief systems of those they attend. Each mission has been able to address chronic pain and other needs, plus provide nutritional, emotional, and spiritual support. In addition to medical expertise and heartfelt prayers for patients and families, Dra Susana Lua Nava offers additional love and comfort by bathing the feet of those she cares for.

As many Mazatecas do not speak Spanish, local interpreters work with the mission.

A Young Girl with Cancer

This year, the team met an 18-year-old who had been diagnosed with stomach cancer in Puebla (the closest public (free) hospital).  Doctors did not tell her or her family she might die. Apparently no treatments were offered and no medicine was available. No education or instructions were given about what to expect or how to handle the pain.

It is possible there was no pain medicine available at the public hospital (often the case throughout Mexico). Perhaps the hospital did not have a palliative care team (likely), perhaps doctors were frustrated when there were no medicines to offer, or, perhaps the girl was discriminated against because she is indigenous and they wouldn’t give her medicine if they had it. There is no reliable account of what actually happened. Dra Susana Lua Nava and the team brought pain medicines and gave the family detailed instructions on how best to take care of their loved one.

Palliative Care Dr. Susan Lua Nava Reviewing Documents with Cancer Patient
Mexican Palliative Care Care Doctor Susan Lua Nava reviewing documents with precious cancer patient in the remote mountains of Oaxaca state

Despite the sad situations of illness encountered, missionary German concludes “in the 14 years I have been on humanitarian missions, I end up receiving much more than I have given.” Being with the noble Mazateca is always a gift. His sentiment was expressed by others who also felt humbled by the experience.

Mexican Palliative Care Law of 2009

The Mexican Palliative Care Law of 2009 states that anyone suffering from severe pain, especially with a terminal condition, has a right to relief from that pain. Unfortunately, the public is often unaware of this human right and where to find the help when needed.  http://www.calidad.salud.gob.mx/site/calidad/docs/dmp-paliar_00C.pdf

See also the Human Rights Watch report on palliative care in Mexico, “needless suffering at the end of life.”    https://www.hrw.org/news/2014/10/24/mexico-needless-suffering-end-life

Juntos Contra el Dolor, A.C.  (United Against Pain) is a non-profit palliative care hospital and hospice in Guadalajara, Mexico offering consultations, in-home care (65-70 patients), and in hospital palliative care and/or hospice service. The mission is supported by donations. Founder Dra Susana Lua Nava is the author of El Enfermo: Terreno Sagrado (The Ill: Sacred Terrain).  For more information write to juntoscontraeldolor@gmail.com  or call (52)(33)3617 2417 in Guadalajara. See http://www.juntoscontraeldolor.com  (currently under construction) and Facebook USA page at https://www.facebook.com/JuntosContraelDolorUSA/

Notes and references:

There are approximately 305,836 Mazatecas in Mexico. Each Mazateca community is usually less than 500 in number. The native language Mazateco is related to Nahuatl.

www.euromedinfo.edu/how-culture-influences-health-beliefs.html/   “Although Hispanics share a strong heritage that includes family and religion, each subgroup of the Hispanic population has distinct cultural beliefs and customs. Fatalistic views are shared by many Hispanic patients who view illness as God’s will or divine punishment brought about by previous or current sinful behavior. Hispanic patients may prefer to use home remedies and may consult a folk healer, known as a curandero (or shaman).”

http://www.mexico.sil.org/language_culture/popolocan/mazatec-maa
https://mapcarta.com/19948092 map of the Sierra Mazateca
https://en.wikipedia.org/wiki/Mazatec_people 
https://en.wikipedia.org/wiki/Huautla_de_Jim%C3%A9nez
https://www.youtube.com/watch?v=_xwIOrTKbxo  Huautla de Jimenez video December 2016
https://www.youtube.com/watch?v=1SXFrih04NA    dancing at the gravesite of someone in San Andres Hidalgo
https://www.vice.com/en_us/article/salvia-velada-mazatec-shaman-ceremony-portfolio-v23n8  unique video by American interested in shamanism and plants

https://www.youtube.com/watch?v=9C5ETSgHWBo  Mazateca shaman known as the Corn Reader

Researched and written by Wendy Jane Carrel

Photos by German Becercil and Jorge Gonzalez Gonzalez

Health & Wellness Mexico, Hospice, Pain, Palliative Care, Palliative Care Mexico

Palliative Care & Hospice in Jalisco, Mexico; Health Talk at Lake Chapala March 25

bigpondlittlegirl
A church at Lake Chapala, Mexico has kindly asked me to speak at one of their health seminars.
I will share what I have learned after 1 1/2 years observing the only 24/7 palliative care and hospice model in Jalisco, Mexico, Juntos Contra el Dolor.  See http://www.juntoscontraeldolor.com
Details:
March 25, 2017   Saturday, 10:30 a.m.  St. Andrew’s Anglican Church
Calle San Lucas 19, Riberas el Pilar, Chapala
Palliative Care and Hospice in Jalisco, Mexico  presented by Wendy Jane Carrel, M.A.
Palliative care and hospice options in Jalisco will be reviewed. There will be a discussion of what might one expect compared to the U.S. or Canada.
The talk is open to the public.
Death and Dying, End-of-Life Care, Hospice, Humanitarian Rescue Older Adults, Mexico, Palliative Care, Palliative Care Mexico

Sacred, Dignified Death in a Mexican Palliative Care Hospital

bigpondlittlegirl

I have been sitting hospice as a volunteer since 1999.

I currently have the honor of assisting at the only 24/7 palliative care hospital and hospice in the state of Jalisco, Mexico, http://www.juntoscontraeldolor.com, (United Against Pain).

It is beyond words to describe what I see and feel as patients come and go – those who get well, those who pass in our presence, those who have family, those who are estranged from family, those who have no family.

Every day is a lesson in human behavior, details of physical illness and care, psychology of illness, and feelings that occur as we observe pain and/or quiet passing of others. Every day, despite the circumstances, there is a demonstration of love.

In early 2016 we received a call from El Refugio (The Refuge) missionaries, a non-profit that rescues people from the streets of Guadalajara. They had found a tall (by American standards), emaciated man who appeared to be dying.

The man had been taken to Hospital Civil Viejo (the Old Civil Hospital) where admittance was refused. The missionaries called in desperation. They remembered Juntos Contra el Dolor serves all regardless of economic position or faith. Everyone deserves a respectful end-of-life.

The  founder of the Juntos Contra el Dolor humanitarian model for Mexico, Dra Susana Lua Nava, urged the group to bring the man immediately. The man arrived dehydrated, malnourished, and appeared as though he would pass at any moment.

mural at entrance to Juntos Contra el Dolor
Mural at entrance to Juntos Contra el Dolor, palliative care hospital and hospice, Guadalajara, Mexico

We gently bathed him several times the first few days removing deep set black from his shoeless feet and body. We constantly changed the sheets and his gown. The odor was strong the first days and then dissipated. Around the fourth or fifth day the patient began to open his eyes. We started feeding him by mouth, little by little.

Each of us who entered his room – physicians, nurses, social workers and volunteers would have the same experience. We would talk to him, but he could only answer with sounds. At first we thought it was because he had lost almost all this teeth. We finally figured out he did not speak Spanish. He may have been a native Huichol from the mountains of Jalisco. We did not know.

But whenever we visited or fed him there would be light of appreciation in his eyes, and a slight smile on his strong, handsome face. When we stroked his forehead and hair or had our hands on his, he would bring our hands to his lips and kiss us. Tears would stream down his face. This is how he communicated. It made us wonder if he was ever attended to in his life. We too were moved. We felt deep compassion for him. We did our best to make him feel welcome and comfortable.

His name? He had no identification. One of the rescuers decided on “Rogelio”. We did not know his age. We guessed age 80. We did not learn the circumstances of his life of course. All we knew is that at this stage of his existence he was alone and abandoned. 

But we were there. One of the missionaries would come when he could to stay by Rogelio’s side all night, as family members usually do.

There were humming sounds of prayer in the room each day from those who stood by him.

In less than two weeks Rogelio passed in the early morning hours, veladoras (candles) burning. I was there alone with the night nurse. We bathed and diapered him. We wrapped his hands and head in gauze. We wrapped him in a new sheet with his face peeking out. I silently talked to him and wished him a good transition. I cannot speak for others who tended to him but his presence was an inexplicable gift.

Most of the patients who come to us (or whom we go to at home) are surrounded by innumerable family members. Rogelio was no longer without support. Hopefully, we gave him a dignified death.

Miraculously, El Refugio found a way to pay for his cremation. They found a place for his remains under a tree (we do not know where) and said prayers for him. He was cared for by everyone along his journey. See https://www.facebook.com/elrefugio.cuarto    Note: When unknown persons pass in Guadalajara their remains are placed in an unmarked communal grave in the city cemetery.

Rest in peace dear Rogelio.

Caregivers, Death and Dying, End-of-Life Care, Health & Wellness Mexico, Hospice, Palliative Care

How Caregiving A Dying Husband Taught a Journalist Appreciation for Living

bigpondlittlegirl

PBS News Hour features a short talk by Tracy Grant, Washington Post editor, about how caring for her terminally ill husband offered an understanding of quality of life and made her own life worth living. (See link at end of blog for video).

As a caregiver, palliative care worker and hospice volunteer, I agree with what Grant communicates. We all become our better selves while caring for others. The ill teach us so much. Their gifts to us last a lifetime. The experiences can be remarkable.

Tracy Grant

Tracy Grant, Deputy Managing Editor, Washington Post

http://www.pbs.org/newshour/tag/tracy-grant/