End-of-Life Care, Health & Wellness, Hospice, Mexico, Palliative Care, Palliative Care Mexico

Palliative Care/Hospice Juntos Contra el Dolor of Mexico Holds Kermes (Fundraiser)

Juntos Contra el Dolor - we are helping diminish pain
Juntos Contra el Dolor – “we are helping diminish pain”

 

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.

setting tables for the kermes
setting tables for the kermes
founder Dra Susana Lua Nava with volunteer nurse Rocio
Founder Dra Susana Lua Nava with volunteer nurse Rocio

 

 

 

 

 

 

 

volunteer nurse Rocio and volunteer coordinator Nena
volunteer nurse Rocio and volunteer coordinator Nena
social workers Silvia and Lupita
volunteer social workers Silvia and Lupita

 

sister volunteers, administrator Sara on the right
sister volunteers – Marta and administrator Sara on the right

 

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End-of-Life Care, Expats, Hospice, Palliative Care, Palliative Care Mexico, Senior Care Mexico

Mexican Palliative Care Thought Leader Dr. Susana Lua Speaks to Expats about Unmet Pain Relief Needs

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.

Dra Susan Lua Nava, palliative care physician, addresses Open Circle
Dra Susan Lua Nava, palliative care physician, addresses Open Circle

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

DSCN1311
Wendy Jane Carrel acts as translator for Dr. Lua’s talk on palliative care in Mexico

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.

End-of-Life Care, Health & Wellness, Hospice, Mexico, Pain, Palliative Care, Palliative Care Mexico

International Pediatric Palliative Care Congress, Mexico, February 2016

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.

DSCN0941

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.

Other discourses:

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.

Note:

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.

Another note:  

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.”

 

 

End-of-Life Care, Health & Wellness, Hospice, Long-Term Care, Palliative Care

Iconic British Rock Star David Bowie Creates a Good Death, a Hero’s Death

Iconic British rock star (singer, writer/poet, actor, dancer, and musician) David Bowie passed away at the tender age of 69 this week, two days after his birthday and the release of a new album.

Who knew he had cancer for 18 months? 

Below is an excerpt from an article I wish I had written based on subjects I like to speak of often – advance planning, creating a way for your end-of-life wishes to be honored, living your last days (if you have terminal illness) in a way you so choose.

Bowie seemed to have experienced a “good death” with the support of family, colleagues, physicians, and undoubtedly a splendid palliative care team. In the next months I trust we will learn more about the kind of care he had. What I like most is that he seemed to have been honored by those around him, that he manifested a way to live to see his birthday and the release of his album.  Rest in peace dear soul.

Here below is the excerpt from http://www.chtonicboom.com by Diana S-V. It is worth going to the web site to read the rest of the report…

How to Die Like Bowie, or, We Can Be Heroes

Posted in Music on January 12, 2016 by Diana S-V

bowie

A picture from David Bowie’s final photoshoot, shot by Jimmy King.

By now, everyone has heard the news of David Bowie’s death of cancer at sixty-nine years of age. Bowie’s death came two days after his birthday and the simultaneous release of his newest album, Blackstar, and so many fans and Bowie aficionados likely received this news after a few days of appreciating the new album, revisiting old favourites, and generally appreciating the oeuvre of a man whose work, words, and aesthetic profoundly changed them in some way.

When I first read the news of his death, the first thing I felt was shock. The second thing that I felt was appreciation that what I was feeling was shock. Let me explain: Bowie is one of the most famous and widely known musical artists to have ever lived, and if he was living with cancer for eighteen months without it being public knowledge, it was very deliberate. This means that he, his family, and his colleagues had to make several complicated arrangements to ensure their privacy, and it also means that the folks who were a part of Bowie’s inner circle had to respect that desire for privacy. In other words, a number of factors had to be in place—human, bureaucratic, legal, and more—in order for Bowie to confront his death in the way that we wanted.\
The more I learn about things like his final photoshoot, the deliberate timing of the release of the video for “Lazarus,” and the tone of ★ (Blackstar) the more I appreciate what a good death looked like for David Bowie, especially given how much labour, organizing, and effort had to be expended in order to make this good death happened. In the weeks to follow, we will likely learn even more about Bowie’s final months and his approach to dying of a terminal illness, but in the meantime, what can we learn about how to die from Bowie? What can we learn about how to make a good death happen for ourselves? Here’s another way to think about it: how can we emulate, in a meaningful way, the worldview and courage of a man that was so widely admired and loved? I’ll be going into more detail in subsequent blog posts about my encounters with the following topics, but it seems to be that David Bowie’s good death consisted of several basic components or actions that we can all practice ourselves. (web site cited above has rest of Diane’s worthy story).

Here is a link to the Lazarus video referred to above…

http://www.ebaumsworld.com/video/watch/84892627/

Aging, Hospice, Mexico, Palliative Care, Senior Services

2nd International Palliative Care Congress in Guadalajara, Mexico – Oct 2015

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?

Juntos Contra el Dolor Palliative Care Congress, Oct 2015, Mexico
Juntos Contra el Dolor 2nd International Palliative Care Congress, Guadalajara, Mexico   October 2015

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. Marcos Gomez Sancho of the Canary Islands, Spain
Dr. Marcos Gomez Sancho of the Canary Islands, Spain, thought leader in palliative care signing one of his books

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):

https://www.youtube.com/watch?v=193oMUtQzGE with Spanish sub-titles

https://www.youtube.com/watch?v=S5pu-FheBAo woman admirer’s production with no sub-titles

https://www.youtube.com/watch?v=QTBQm5RWUcw  in French

Other compelling lectures included anesthesiologist Dr. Beatriz Angelica Flores Garcia’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.

 

Hda. Madre Silvia Susana Lua Nava, MD
Hda. Madre Silvia Susana Lua Nava, MD

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 juntoscontraeldolor@gmail.com.

The web site for Dr. Marcos Gomez Sancho is http://www.mgomezsancho.com

 

End-of-Life Care, Hospice, Mexico, Palliative Care

World Palliative Care and Hospice Day – A Note from Guadalajara, Mexico

Juntos Contral El Dolor team
Juntos Contral El Dolor team

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.

Juntos Contra El Dolor serves all regardless of socio-economic standing, religious preference, age, or race.  See http://www.JuntosContraElDolor.com.

Above is a photo of the Juntos team.  Dr. Lua is in the center.

 

Ecuador, End-of-Life Care, Hospice, Palliative Care

Hospice Nuns Offer Love and Palliative Care in Cuenca, Ecuador

Cuenca High Life just posted an article I wrote about the precious hospice nuns of Cuenca, Ecuador.  They offer the energy of love and light, plus comfort and serenity to those who are gravely ill and making their transitions.

Here below is a link to the article…

http://cuencahighlife.com/one-of-cuencas-best-kept-secrets-the-siervas-de-maria-servants-of-mary-hospice-nuns-provide-the-support-of-a-loving-family/

I shall miss these remarkable ladies (eight total) but am looking forward to meeting up with others of their order in Guadalajara and suburban Los Angeles.

Precious Servants of Mary - Sister Marina, Sister Magdalena, Madre Teresa
Precious Servants of Mary – Sister Marina, Sister Magdalena, Madre Teresa