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.
The DeathCafe.com web site indicates there are 9 death cafes in Mexico. I could only find one. It is located in Mexico City. See http://deathcafe.com/deathcafe/1695/ .
I have so much more to learn. I am now eager to return home to attend hospice social worker and end-of-life guide Betsy Trapasso’s Death Café LA https://www.facebook.com/deathcafelosangeles/ or Maggie Yenoki’s gathering in Pasadena https://www.facebook.com/deathcafepasadena/
https://www.counterpunch.org/2018/01/12/what-happens-at-a-death-cafe/ excellent overview of a Death Café gathering in Sonoma, California by Shepherd Bliss
https://www.facebook.com/DEATH-Cafe-Singapore-402018853254286/ a unique look at what Death Café Singapore is paying attention to
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 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.
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.
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.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
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).
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.”
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.
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.
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 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).”
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
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 try and 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 the 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 might 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 a lot of 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. And 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.
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, Deputy Managing Editor, Washington Post