Looking forward to another trip to beautiful San Miguel de Allende in March 2023. If it were not so cold at night in that expat haven of 10,000 or more retirees, I’d travel there more often!!
In any event, pleased to be joining talented patient advocate Deborah Bickelof Be Well San Miguel for a talk about end-of-life planning, palliative care, and hospice in Mexico titled “Planning for the Third Stage of Life.”
Deborah will share the wisdom of preparing for your care, how she first learned to plan when she worked with AIDS in Africa, and how creating your Mexican Advance Healthcare Directive aka your “documentacion jurada” may assist in creating quality of life to the end of life. The ultimate message: there are good reasons for all foreigners in Mexico to obtain these notarized documents.
I will provide a brief history of palliative care and hospice in Mexico, the Mexican Palliative Care Law of 2009, what care is present now, where to find support, what the future may hold. My talk is based oneight years of research, conferences, studies for a Mexican palliative care diploma, volunteer years with a Jalisco palliative care hospital, site visits, and relationships with palliative care organizations and hospice providers in Jalisco (Guadalajara, Lake Chapala, Lagos de Moreno, Puerto Vallarta, Tepatitlan), Mazatlan, Merida, Mexico City, Morelia, San Miguel de Allende, and Tijuana.
The event is scheduled for 11:00 a.m., Wednesday, March 15, 2023, at the Kubo Hotel Cafe, Stirling Dickinson 28, San Miguel de Allende, Mexico.
Deborah holds an MA in Public Health from UC Berkeley. She is also a graduate of Stanford University’s Physician Assistant program where she later taught. She has been dedicated to healthcare advocacy in Mexico, Nicaragua, Guatemala, Cuba, and Africa. She is a fluent Spanish speaker. See https://bewellsanmiguel.com
My bio for this subject is as follows:
Wendy Jane Carrel, MA, is a Spanish-speaking senior care advocate from California. She has travelled Mexico for several years researching health systems, senior care, and end-of-life care to connect Americans, Canadians, and Europeans with healing options for loved ones. She is a compassionate companion and palliative care liaison, legacy writer, co-founder of Café Mortality Ajijic/now Death Café Ajijic, and founding member/speaker of the Beautiful Dying Expo (USA). She is a trauma-informed, gentle End-of-Life Doula (National End-of-Life Doula Alliance proficient), and a speaker and published author on subjects related to senior well-being. Wendy’s web site is https://www.WellnessShepherd.com
A group of American, Canadian, and UK ex-pats and “snowbirds” recently gathered for the first Death Café Ajijic, Mexico. There were 18 persons present at Café El Grano including an anesthesiologist, a hospice nurse, a hospice social worker, a psychiatrist, teachers, and others. There were two facilitators who work with end-of-life planning and transitions.
If the term Death Café (excuse the direct wording, I prefer Sacred Conversation) is new to you, you may hear it more and more. Death Cafes or Café Mortels began with Swiss sociologist Bernard Crettaz who held over 100 such meetings in his native country until recently. In 2011, Jon Underwood, inspired by Crettaz, created Death Cafes in England (see history at http://deathcafe.com/what/ ).
These all-volunteer social events to discuss death and dying respectfully and informally (no agenda) are now held in 52 countries including Australia, Europe, Canada, the U.S., and parts of Latin America where death has sometimes, but not always, been a foreboding and scary subject. Buddhist, Hindu, or Muslim countries, and places with indigenous populations tend to consider death a natural part of life and honor it as such more easily. Most café organizers work with end-of-life, and tend to focus on alternative, kinder, spiritual ways of departing. Note: There is a Death Café in Singapore.
“At a Death Café… our aim is to increase awareness of death to help people make the most of their (finite) lives,” states the Café web site. Most of all, the Café encourages an exchange of stories and perspectives as a way to embrace death.
What prompted a Death Café in Ajijic?
First, a number of retired ex-pats and visitors die in Mexico unexpectedly, and, they die without a health care directive and/or an end-of-life plan. There is a need for continued conversation and education.
Second, Loretta Downs, MA, has been speaking to locals at a popular venue, Open Circle (as well as at In the Heart of Awareness, the Buddhist center), about end-of-life for several years. She flies in from Chicago every January to deliver her talks. About 300 + persons show up to listen as she encourages her audiences to become friendly with the idea of mortality and to prepare for it – think about it, and express to others what you want. See http://www.endoflifeinspirations.com.
Third, yours truly, Wendy Jane Carrel, MA, has been speaking to ex-pats around Ecuador for three years and subsequently in Mexico with the same passionate message – make friends with your demise, please make a plan.
It seemed natural for Loretta and I to team up to host a Café for Lake Chapala.
My interests had been reinforced as a result of volunteering two years at Juntos Contra el Dolor, the only 24/7 palliative care hospital and hospice in the state of Jalisco, a model for Mexico. I was given the gift of observing how painful chronic and terminal illnesses are treated, the politics of medicine, the politics of opioids, cultural difficulties related to dying, family constellations, and the difficulties of running a non-profit in a rich country (yes, rich in many resources) with little tradition of philanthropy. Most of all, I learned the concept of a “good death” requires much education and outreach in Mexico as well as at home.
Loretta’s friend Nancy Gershman, who produces Death Café NYC, gave us welcome pointers before the Ajijic meeting. We followed Nancy’s advice – small tables of 3-4 for intimate conversation, one of us (Loretta) to circulate and ensure participant exchanges were flowing, see that anyone who was recently grieving the loss of a loved one was comfortable, followed-up by an evaluation to learn what we could do better the next time. https://www.meetup.com/Death-Cafe-New-York-City/
Because Loretta and I travel often, she is based in Chicago, and I in LA, we may not be producing other cafes until January 2019 unless another healthcare worker can pick-up in our absence.
Note: If you have not heard of Ajijic, it’s a sleepy Lake Chapala village, with a population of around 10,000, an hour south of Guadalajara. It is a popular tourist destination. Lake Chapala is home to around 20,000 full-time retirees from north-of-the border.
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).
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.
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.
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.
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.
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 firstname.lastname@example.org 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).”
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.
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.
Juntos Contra el Dolor, A.C., the only 24-7 palliative care/hospice in Jalisco, Mexico, held a kermes to raise funds for its humanitarian medical effort which aides patients with chronic pain, and, at end of life. The Juntos team also provides psychological and spiritual support to families of patients.
The kermes was held on a Sunday from 8 a.m.to 2 p.m. outside the Templo of San Bernardo on Plan San Luis in northwestern Guadalajara, a church with 3,000 parishioners.
A Mexican kermes is an outdoor party for a special cause. To support the cause, people buy food and drink. The Juntos kermes served tacos with birria, quesadillas, homemade jamaica (a hibiscus drink) and horchata (a rice drink). Juntos brochures were on each table.
The nurses, who are the only paid staff (except for volunteer retired nurse Rocio), were taking care of patients at the hospital around the block..
The Spanish word kermes is derived from the Turkish word kermes which originally meant a handicraft bazaar to raise money for charity. It is also derived from the Dutch word kermesse, (kerk = church, mis = mass), a festival after mass.
Juntos Contra el Dolor, AC (United Against Pain) a palliative care non-profit in Guadalajara, Mexico produced its 2nd International Palliative Care Congress (II Congreso Internacional de Cuidados Paliativos) at Expo Guadalajara October 29, 30, and 31, 2015. Physicians, psychologists, social workers, tanologists, nurses, and hospice volunteers participated in a study of the theme, Health Crisis: A Threat or an Opportunity for Growth?
Dr. Marcos Gomez Sancho, pioneer and thought leader in palliative care from Spain’s Canary Islands, was the main speaker. He spoke of the History of Death in Different Cultures, the Agony of Death vs. Dying in Peace, and, Advice for Family Caregivers in Terminal Situations. In addition to his own conclusions, he chose quotes from poetry, music, psychiatrists, and authors, as well as art work, to illustrate his main points:
the family must allow the ill person to make their departure
the experience of the person who is dying can help those who are witnessing their passing
the worst deaths are for those attached to machines (extreme personal pain, extreme financial costs)
the care team must be inter-disciplinary for best positive outcomes (attending to psycho-social, economic, physical, and spiritual needs of patients and families)
Dr. Gomez played a tape of Greek singer Demis Roussos’ Morir al Lado de Mi Amor (To Die Beside My Love), which reiterates a common last wish. He also quoted Austrian neurologist Sigmund Freud, “If you want life, prepare for death.”
Here below are You Tube links to Demis Roussos’ music in Spanish and French. (The Congress heard audio only, it did not view photos):
Other compelling lectures included anesthesiologist Dr. Beatriz Angelica FloresGarcia’s controversial topic Morfina vs. Marihuana. She outlined how morphine and marijuana can be used for pain relief. No one on the panel of professionals, nor anyone from the audience, could agree about use of either or both, and/or effects.
Psychologist Ortencia Gutierrez Alvarez focused her talk about crisis in the family as it relates to decisions. Conclusion? Allow free will of the patient. Psychologist Fabiola Montoya Martin del Campo who has worked with youth with cancer for over 20 years shared stories of the bravery and wisdom of children facing crisis. Dr. Cristina Orendain, a well-known naturopath with a number of health food stores in Guadalajara, spoke about tryptophan for pain relief and as a mood enhancer in our food and in supplement form.
Juntos Contra El Dolor founder Dr. Silvia Susana Lua Nava, an expert in palliative care and a nun, was the guiding light behind the conference together with Sister Martina Zumaya Tamayo, a nurse nun with a specialty in bio-ethics. They offer an integrated model for Mexico including best possible professional care with support for both patient and family. They welcome persons of diverse socio-economic background, religion, age, and race at their hospital for care, counseling, or to arrange in-home services.
Dr. Lua offered her own account about suffering and pain as an opportunity for spiritual growth. In 2015 she experienced three invasive surgeries, one to correct a surgery gone wrong. From age 19 to 2015 she endured five other surgeries. The presentation of how she learned to confront and overcome pain and the unknown was both amusing and inspiring. Dr. Lua is also the author of a book about palliative care which shares her insights, El Enfermo: Terreno Sagrado (The Ill: Sacred Ground).
Dr. Manuel Centeno from OPD Hospital Civil Guadalajara (the new civic hospital Dr. Juan I. Menchaca) addressed the most frequent problems treating patients with cancer of the colon. Nurse Elisa Gutierrez Andrade spoke of placement and complications involved with surgically implanted PEG’s (percutaneous endoscopic gastronomy), stomach feeding tubes. In both instances, explicit photos were shown and the lessons about care were clear and convincing.
Maria de Jesus Gonzalez Romo spoke of home nursing care and a not unusual circumstance – attending to men who have two families – two “wives” and two sets of children all meeting at the man’s death bed. Gonzalez spoke of what the patient suffers physically, psychologically, and spiritually – and how survivors deal with the patient’s pain and their own. Lots of drama – anger, forgiveness, fighting – but also a lot of love.
Attendees earned 20 continuing education credits and a diploma from the Colegio Nacional de Cuidados Paliativos de Jalisco, www.comecupal.com.mx
A note about palliative care in Mexico:
The Ministry of Public Health instituted a law in 2009 that all citizens should have access to palliative care (pain relief and comfort for chronic diseases and at end-of-life). In October 2014 the Human Rights Watch conducted a study which showed the availability of palliative care is uneven and limited throughout the country. There are also politics associated with obtaining opiods. See article at http://www.ehospice.com/ArticleView/tabid/10686/ArticleId/13355/language/en-GB/Default.aspx
A note about Juntos:
As with most non-profits, Juntos Contra El Dolor relies on donors – pharmaceutical companies, the Catholic church (which provides the housing), volunteers, and others. Throughout the year Juntos hosts weekly educational activities in an effort to support its professionals and its expenses. Dr. Nava and two other nuns are unpaid. Funds for cleaning supplies, diapers, kitchen items, linens, gasoline for in-home visits, nursing staff, nursing supplies, and upgraded office equipment are always in need. Juntos is registered as an international non-profit and all donations are tax deductible by deposit to the Juntos Contra El Dolor account at ScotiaBank CTA 01002517167. More information is available at tel. (52)(33) 3617-2417, http://www.JuntosContraElDolor.com, or at email@example.com.
I have the honor of serving as an observer at Juntos Contra El Dolor (United Against Pain), a palliative care hospital and hospice in Guadalajara, Mexico.
Its founder, Dr. Susana Lua Nava, is a graduate of the medical school at UAG (Universidad Autonoma de Guadalajara). She did further training in the Canary Islands with Dr. Marcos Gomez Sancho, considered a highly-regarded thought leader in palliative care.
Dr. Lua, also a nun, is dedicated to creating an integrative model for Mexico which addresses the needs of not only the patient, but of the family as well.
Her non-profit produces educational seminars on palliative care for both professionals and the public. On October 29, 30, and 31 Juntos Contra El Dolor is sponsoring a 20-hour continuing education international conference at Expo Guadalajara entitled “Crisis en Salud: Amenaza o Crecimiento?” (Health Crisis: A Threat? Or an Opportunity for Growth?).
Pain management pioneer Dr. Marcos Gomez Sancho of Spain will focus on the “Culture of Death in the Latin World”, and “Dying in Peace.” Other themes include morphine vs. marijuana, the psychological struggle in patients with terminal diseases, how the family handles a crisis and makes decisions, interventions when pain is difficult to control, nutrition, and more.
Juntos Contra El Dolor is located in the parish of San Bernardo (Mezquitan Country), known for its dedication to social justice. There is a day center for Down’s Syndrome children, a drug and alcohol live-in re-hab, a senior home, and the hospital.
FASEC (Fundacion al Servicio del Enfermo de Cancer/Foundation Serving Those Ill with Cancer), together with Care Partners International of Washington state, and the University of San Francisco, Quito hosted a palliative care training in Spanish for five days, April 20-24, the first in a series of four trainings for physicians, nurses, psychologists, volunteers, and others. The well-attended event drew healthcare workers from Cuba, Cuenca, Europe, Mexico, and the U.S.
The main speaker was Dr. Susana Lua Nava, a highly regarded Mexican educator and nun who teaches throughout Mexico and at UAG (Universidad Autonoma de Guadalajara). She runs a hospice, Juntos Contro El Dolor (United Against Pain), with three nurse nuns and a staff of volunteers. Dr. Lua and her team are dedicated to the alleviation of pain in all – no matter a patient’s background, religious belief, or economic position.
Dr. Lua, author of El Enfermo, Terreno Sagrada/The Ill, Sacred Terrain, offered several slides of her work in Mexico and Spain, gave stunning examples of patient care, and spoke about dying at home or in a hospital (advantages and disadvantages of both), myths and realities on the use of morphine, the art of sharing sad news, and preparing the spirit, among other subjects. The most riveting discussion was on ethical dilemmas, a subject she teaches often – why and who one tells or does not tell of their terminal condition based on socio-economic backgrounds, culture, expectations, and other factors.
The next FASEC trainings are scheduled for the second week of June, the third week of July, and a week in October.
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