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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

See this link for bios to the presenters:

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

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

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

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

Note no. 2:

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

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

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

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

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

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

This year, I attended a new event in California…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Canadian Stephen Jenkinson, author and speaker

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

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

See https://beautifuldyingexpo.com/

Death and Dying 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

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, Hospice, Palliative Care

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

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

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

Add Do Not Hospitalize to Your Advance Healthcare Directive or Five Wishes?

Can you have control over your end-of-life care? Is it possible to avoid aggressive medical treatment if you do not want it?

According to a Dartmouth Atlas study, 80% of terminally ill patients in the U.S. say they don’t want intensive treatments. 

My interpretation: Patients, whether terminally ill or not, are asking for comfort, quality of life for their last days, and relief from pain (palliative care).

The "End-of-Life Conveyor Belt": Dying patients are kept alive by machines, alone in a cold and sterile environment, their arms strapped down to the bed so that their catheters aren't dislodged. Photo: Getty Images, Jan Halaska / This content is subject to copyright.

Photo: Getty Images, Jan Halaska

“The ‘End-of-Life Conveyor Belt’ where dying patients are kept alive by machines, alone in a cold and sterile environment, their arms strapped down to the bed so that their catheters aren’t dislodged.”

The photo and statement above are from an article by Jessica Zitter, MD, for the Houston Chronicle.  She says, “my patients need to understand their options and make their own decisions.”

 

In order to make one’s own decisions in the U.S., such as avoiding hospitalization and invasive treatment, one must create an Advance Healthcare Directive or Five Wishes (an alternative advance directive recognized in 42 states and the District of Columbia). You must declare your specific medical wishes BEFORE such events might occur.

Your wishes must be notarized. Then they are legal. Be aware they may not always be honored by ambulance services or doctors in hospitals. Ideally, you will have an advocate who is your healthcare proxy or surrogate for healthcare decisions – usually a loved one with a copy of your wishes in hand.

It is also wise to prepare a POLST Physician’s Order for Life Sustaining Treatment (California) or MOLST Medical Order for Life Sustaining Treatment(New York). This way your wishes will be registered on an electronic record should you land in a hospital.

What is usually included in a healthcare directive?

It is common to include a DNR (Do Not Resuscitate), DNI (Do Not Intubate), or DND (Do Not Donate) organs or your body. These are personal choices – saving and prolonging life at all costs or not, tubes or not, donating or not. It is also common to designate a healthcare proxy or surrogate for healthcare decisions as mentioned above, someone you trust to make decisions in the event you cannot.

A recent article on Huffington Post reported on a request some folks are now including, a DNH (Do Not Hospitalize). See link below for entire article.

http://www.huffingtonpost.com.mx/entry/do-not-hospitalize-orders_us_59666c35e4b0a0c6f1e54ed9

I am currently in Mexico exploring senior care, palliative care, and end-of-life issues. The Do Not Hospitalize order got me thinking, even though I am in good health. So last week I updated my Mexican healthcare wishes because American and Canadian Advance Healthcare Directives are not recognized or honored if something happens in Mexico (or most of Latin America where Napoleonic code prevails, and not common law). I have a similar document for Ecuador. When anywhere outside the U.S. I carry a copy of my Five Wishes anyway.

Note: I am grateful to hospitals, one saved my life as I was not expected to survive my birth. In certain cases, such as extreme bleeding or falls, there may be no other option than a hospital. It would be wise to specify exceptions for hospitalization in your document if you decide to mention the preference. In my experience, most people in frail health want to be kept comfortable with palliative care at home, especially for their last days. In this circumstance, caregivers must know not to take you to a hospital.

Additional note: If you are traveling in Latin America, do not have health insurance with worldwide coverage, and are able to state your wishes cogently, and need hospital care, go to a public hospital. If you are accepted at a private hospital you will not be able to walk out the door unless every peso is paid.

An estimated 62% of Americans do not have an Advance Healthcare Directive.

I urge you to create your healthcare wishes if you haven’t already. I advise carrying a copy when traveling by air, train, or sea. Keep a copy handy in the glove compartment of your car … in case of emergency and for peace of mind.

References:

https://www.agingwithdignity.org/   where you can order a Five Wishes form in English or several other languages

http://capolst.org/   California Physician’s Order for Life Sustaining Treatment. You can download the pink form, fill it out, submit to your physician, who will in turn enter it into a statewide electronic system

http://www.dartmouthatlas.org/data/topic/topic.aspx?cat=18

http://www.houstonchronicle.com/local/gray-matters/article/What-Ted-Cruz-doesn-t-get-about-dying-with-dignity-10985879.php?cmpid=fb-premium

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

http://www.npr.org/2017/08/09/542390784/a-physician-explores-a-better-path-to-the-end-of-life   NPR/Terri Gross interview with Jessica Zitter, MD, a palliative care specialist

https://www.iadvanceseniorcare.com/article/memory-care/advance-directive-struggle-alzheimers-resident?utm_campaign=Vertical%20-%20Memory%20Care&utm_source=hs_email&utm_medium=email&utm_content=55520297&_hsenc=p2ANqtz-_ZuLjuUATBQhAi_dTeVehajW7RuvMRO7pZriRKLrolsP_2zJWe7N3QKGPp2sAzxtLBK5GEqz075MHAwzmHqrY33xvXzQ&_hsmi=55520297    an article which speaks to the complexity of advance healthcare directives

 

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

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 renowned specialist 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).”

https://mapcarta.com/19948092 map of the Sierra Mazateca
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, Hospice, Pain, Palliative Care, Palliative Care Mexico

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

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.