Mexican non-profits have a hard time surviving. One can say many non-profits, no matter the country, find it challenging to be sustainable.
In the state of Jalisco, there are over 800 registered A.C.’s, Asociaciónes Civiles, or non-profits. In all of Mexico, there are about 4,000 registered non-profits. That’s a lot of competition in a land where philanthropy, though existent, is not part of the culture.
Juntos Contra el Dolor of Guadalajara is a remarkable entity. It is a Mexican model for palliative care and hospice. Its resourceful, enthusiastic founder and palliative care educator Dra Susana Lua Nava is an ecumenical nun. Her team serves anyone of any belief system or economic background. All are dedicated to offering holistic pain relief for life-limiting conditions or at end-of-life.
In 2014 Dra Susana Lua Nava and Juntos Contra el Dolor received the prestigious state of Jalisco IJAS award for outstanding contributions by a non-profit.
Juntos Contra el Dolor’s 24/7 humanitarian effort includes not only medical attention at its 8-bed hospital but outreach and education to 65 or more patients and their families at home. For a Mexican non-profit dependent on donations, this is an achievement. Faith in the need, faith in all possibilities, and a lot of love are components of the Juntos ability to continue despite obstacles.
Every member of the team is a volunteer except the nurses. The team consists of palliative care doctors, psychologists, social workers, chaplains, and trained volunteers.
Juntos Contra el Dolor held its annual fundraiser, a Fiesta Mexicana gala, on Saturday, September 24.
Juntos Contra el Dolor provides weekly consultations in a donated space in San Augustin, a suburb to the west of Guadalajara. By January 2017 there will be consultations for those suffering from pain at Lake Chapala, an hour from Guadalajara. The offices will be in the Church of San Juan Batista in San Juan Cosala.
As mentioned, the non-profit stays afloat by donations – usually in-kind support such as diapers, linen, paper supplies, fresh organic food, and new medicines.At the following link you can read what is needed and where one can make donations. http://juntoscontraeldolor.com/Donaciones/don.html
Dr. Lua received three years of specialized palliative care training in the Canary Islands with Dr. Marcos Gomez Sancho, considered the leading palliative care physician and professor of the Latin world. Dr. Lua is a thought leader for Mexico, and author of El Enfermo: Terreno Sagrado (The Ill: Sacred Terrain).
Dra Susana Lua Nava, a palliative care physician based in Guadalajara, Mexico, spoke to over 200 North Americans and locals at Open Circle on the Lake Chapala Society grounds in Ajijic, Mexico about pain relief for chronic conditions and end-of-life.
Her passionate presentation about the unmet needs in Jalisco state and throughout the country triggered many questions from the audience, plus more interest in bringing such services to the lake. Lake Chapala is about an hour’s drive from Mexico’s second largest city Guadalajara. An estimated 20,000 North Americans reside there during high season.
It is a goal of Dra Lua’s non-profit Juntos Contra el Dolor, A.C., (United Against Pain), http://www.juntoscontraeldolor.com, to educate communities throughout Mexico about what palliative care is, and show how to offer comfort care to those with life-limiting diseases. Ideally, there would be models for this care in each state. Currently, palliative care is primarily found in three large cities at regional hospitals – Guadalajara, Mexico City, and Monterrey.
In 2009 the Ministry of Public Health of Mexico established guidelines for palliative care entitling all residents of the nation to relief from pain. The challenge has been that most people do not know exactly what palliative care is, nor where to find it. Palliative medicine is often confused with pain clinics which may offer medications but do not necessarily include a holistic support team for the patient and family members during such trying times.
As of yet, there is no dedicated palliative care/hospice team – physicians, nurses, psychologists, social workers, clergy, and volunteers working together at Lake Chapala. There have been previous efforts to establish a hospice. (The main cities at the lake are Ajijic, Chapala, San Juan Cosala, and Jocotopec. It takes around 40 minutes to drive from Chapala on the east end to Jocotopec on the western end).
There are a number of highly talented retired palliative care and hospice administrators, physicians, nurses, clergy, social workers, and others from Canada, the U.S., South Africa, and other countries at the lake. Several groups have formed to discuss how to establish a service that can serve all populations and will endure.
DVDs of the chat by Dra Lua can be ordered at http://www.opencircle-ajijic.org
I performed a Cliff Notes version of Dr. Lua’s talk as there was much to cover in a short amount of time.
A week after the presentation to North Americans, Dr. Lua gave a public health talk on the same subject to local Mexicans at the Ajijic Cultural Center.
Dr. Jose Gustavo Valladores, President of the Gerontological Society of Jalisco, addressed a group of older adults in a meeting room at Juntos Contra el Dolor Hospital in the parish of San Bernardo, Mezquitan Country, Guadalajara, a few days ago.
Valladores, a spry, humorous, and fit 75 year old advocated eating less, walking more, sleeping about seven hours, and learning to breath slowly and deeply for a more healthful life.
Dr. Valladores contends we do not need to eat as much as we continue to age. His comments remind me of a movement afloat in senior living in the U.S. called Grind Dining, serving small, elegant portions that are easy to see, easy to consume, and easy to manage, especially for those with arthritis, dementia, etc. Studies show health outcomes with such meals are positive.
Harvard-trained physician and gerontologist Bill Thomas of the Green Project and Eden Alternative has a not to dissimilar approach for aging well that he calls MESH. Move, Eat, Sleep, Heal.
The conversation for wellness in aging continues with this notable consensus among two gerontologists from two different cultures. A return to basics. Wise.
Dra Susana Lua Nava, the founder of the 24/7 palliative care hospital and hospice, was Dr. Valladores’ medical school student 20 years ago.
With two days of notice I decided to attend a three-day intensive on pediatric palliative care, February 22-24, 2016 at the University of Guadalajara Medical School (Building Q). It was part of the XVII CIAM (International Congress on Advances in Medicine Contributing to the Future of Health) and was hosted by the Nuevo Hospital Civil (New Civil Hospital) next door. The hospital is where University of Guadalajara Medical School students intern. I am glad I participated.
Until now I have witnessed palliative care (comfort care and non-invasive pain relief) for older adults with chronic conditions or at end-of-life. I knew I would be acquainted with some material. I also knew there would be quite a bit more for me to learn or hear repeated. Heart-rending stories and photos of children fading away were anticipated. And when I saw them, they surely took my breath away. Envision Marlo Thomas and her St. Jude’s Children’s Hospital efforts plus the images you’ve seen of children suffering from maladies across the globe.
Almost 100 physicians, nurses, psychologists, socials workers, and volunteers attended the 22-hour course hosted and organized by Dr. Yuriko Nakashima, a pioneer in this arena in Jalisco state, and a highly-regarded pediatrician and university professor. Yes, her name is Japanese; she is a Mexican citizen.
All speakers were excellent and exceptionally professional.
Dr. Yuriko Nakashima, Dr. Lisbeth Quesada Tristan, Dr. Jorge Ramos Guerrero, psychologist Ortencia Guiterrez Alvarez
Presentations by special guest Dr. Lisbeth Quesada Tristan of Costa Rica, referred to as the “abuela” or grandmother of pediatric palliative care, were a stand-out. (She’s actually young). Her work and a collaboration with her non-profit Fundacion Pro Unidad de Cuidado Paliativo (see www.cuidadopaliativo.org) were celebrated at a signing ceremony which included the Director of Guadalajara’s New Civil Hospital Dr. Francisco M. Preciado Figueroa, the Director of the Old Civil Hospital Dr. Benjamin Becerra Rodriguez, and Dr. Yuriko Nakashima representing both the New Civil Hospital Department of Pediatrics and the University of Guadalajara Medical School. Dr. Quesdada is also active with ICPCN, the International Children’s Palliative Care Network.
Dr. Quesada tackled the following subjects with enthusiasm, humor, intelligence, and wisdom:
She started with a definition of palliative care – comfort care, relief from pain, and non-invasive procedures for irreversible medical conditions, progressive diseases with no cures, premature babies, and end-of-life. She asked, do you believe in aggressive procedures with a child hooked up to machines until life’s end or should the child be held in your arms, hearing a soothing voice, feeling the vibrations of love, and feeling a sense of security? We are not clinicians of pain only, we are mostly providing quality of life in dire circumstances.
Is palliative care a right or a necessity for children?
The main things everyone should know about pediatric palliative care
When “hello” means “good-bye”
Communication and support for children and adolescents with terminal illnesses
From Cocoon to Butterfly, the metamorphosis of the suffering child
How to Deal with Dysfunctional Families
The implications of sedation
Here is a paraphrased summation of Dr. Quesada’s comments:
It is offensive to say terminally ill patients. Please be careful with word choice, think about saying “children with life-limiting diseases.”
We must be part of a new paradigm with extensive outreach, going to children in their homes. (Dr. Quesada’s non-profit also serves isolated villages in the mountains of Costa Rica)
Respect children, their rights (they have rights even though not legally competent), their pain, and their wishes
Everyone is important until the last minute of their life.
To work with children one needs huge passion.
We could not do our work without volunteers!!
“Santa morfina”, blessed is the existence of morphine to help relieve pain
“Amar es saltar.” Saltar literally translated is jumping but the meaning here is love is a way to overcome.
Pediatrician Dr. Jorge Ramos Guerrero (who holds a Master’s in palliative care from a Spanish university) delivered passionate, thoughtful reviews of…
History of Pediatric Palliative Care
Holistic Attention for Children in Palliative Care
Medicine Based on Positive Principles
Dr. Ramos outlined the history of care from Egyptian times to the present with artistic representations, the meaning of the Latin words Hospitum (providing hospitality) and Pallium (to relieve suffering), and reminded the audience that death is a normal process. He emphasized that the primary aspects of treatment are warm care by an interdisciplinary team, and that the objective is pain relief. He reminded the audience: this is not euthanasia. We are present in all moments to create quality of life until the end.
According to INEGI (government) statistics, there are 5-6,000 Mexican children with cancer each year and 56% of these children outlive their diagnosis. Part of holistic care is asking the patient what is most important for him or her. We must put ourselves in the patient’s shoes. With regard to current medicine, Dr. Ramos advocates a newer paradigm – more patient-centered care that offers the best science, the best communication (especially the ability to listen), and the best inter-personal relations.
Dr. Cesareo Gonzalez Bernal spoke of legal implications in palliative care at end-of-life, a subject that always needs continual review. Focusing on patient rights is key. Assisting a patient to die is against the law.
Dr. Regina Okhuysen-Cawley, a Mexican-born American physician working in Houston who specializes in palliative care and hospice, spoke of palliative care as it is used in intensive pediatric care, and how successful an integrative approach can be at the end of life.
Dr Patricia Ornelas and psychologist Ortencia Guiterrez Alvarez (Dr. Nakashima’s long-time colleague at Nuevo Hospital Civil) talked about how to confront death and offered each participant exercises in imagining his or her end-of-life.
Other themes covered by other pediatric palliative care pioneers were how to give the bad/sad news, ethical dilemmas in palliative care, the importance of the nurse on the palliative care team, and spirituality of children.
Madre Martina Zamaya Tamayo, a nurse nun with a Master’s in Bio-ethics, was in the lobby outside the Guadalajara Congress to represent the only 24-7 palliative care hospital in Jalisco, Juntos Contra el Dolor. See www.juntoscontraeldolor.com. She introduced Dr. Susana Lua Nava’s book El Enfermo: Terreno Sagrado (The Ill: Sacred Terrain) to the attendees. Representatives from a dermatological supply house gave out free samples of medicinal lotions.
It was an honor to be in the company of dedicated, informed, and passionate healthcare professionals focused on comfort care and pain relief for ill children.
No medical schools in Mexico currently offer specializations in palliative care, although according to a Human Rights Watch report from October 2014, six of the country’s 102 medical schools offer some courses. Palliative care diplomas can be received from a palliative care institute in Guadalajara or Mexico City but this is not the same as 2-3 years of specialty training abroad. Mexican doctors usually go to Argentina, Chile, or Spain for this specialization. Anesthesiologists can order morphine, others cannot, unless certified by the government through special courses. And for whatever reason, according to one of the speakers, pediatricians have not been readily included in the arena of palliative care in Mexico to date.
It seems to be in the hearts and minds of Mexican healthcare providers to develop and implement more palliative care services for children.
Dr. Rut Kiman of Argentina, representing the ICPCN (International Children’s Palliative Care Network), and Diedrick Lohman of Human Rights Watch, traveled to five states of Mexico in 2015 to see if a December 2014 initiative to include children in palliative care in Mexico was being implemented. They visited the states of Guanajuato, Hidalgo, Morelos, Queretaro, and Toluca. Although they found pediatric palliative care in its infancy, Dr. Kiman wrote “it is hoped it will soon be a reality in Mexico thanks to the efforts of professionals, non-governmental organizations, and health policy makers.”