Caregivers, Death and Dying, Death and Dying Education, End-of-Life Care, End-of-Life Education, Hospice

All Volunteer Hospice of San Luis Obispo County Sustainable for 41 Years

For the last few years I have had the good fortune to visit palliative care and hospice entities in California as well as in six states of Mexico with the objective of learning more about what works, what’s missing, and what might work in Mexico for years to come. There are challenges based on cultural differences, but all is possible.

I am comparing various models – hospitals and facilities (medical), in-home community outreach (medical and/or volunteer), all volunteer, government, non-profit, and for profit.

Hospice of San Luis Obispo County (HSLO) has been on my radar for some time because it is a successful, locally based non-profit volunteer hospice that has sustained itself for 41 years!! For those of you who are familiar with the operations of non-profits, this is an extraordinary achievement.

Aside from serving the public, HSLO educates and trains locals and others as end-of-life doulas (companions). They host Death Cafes and much more.

The sustainability is based on more than dedication and love – mainly inventive ways to engage the public, an especially hard task in a difficult economy.

Hospice of San Luis Obispo County, California office

I am so pleased I was finally able to visit HSLO. I am indebted to the Executive Director and the Director of Volunteers, the few paid staff, for a warm, meaningful, memorable exchange.

HSLO is one of six hospice services in a county with a population of around 284,000. It is the only volunteer in-home hospice supported by the generous energy of over 200 volunteers. They serve approximately 5,000 persons per year.

Any county resident with life-limiting illness is served through “in-home respite care, emotional, spiritual, practical and non-medical support, and grief counseling support (group and individual).”

Other services are education about dying and death for professionals, caregivers and the community, doula programs, Death Cafes, Threshold Choirs, and Pet Peace of Mind groups.

From my perspective their outreach and activities place HSLO in the vanguard of the “death care and the death positive” movement that is sweeping North America and beyond.  It is exhausting but rewarding work.

Additional treat: I was blessed to attend HSLO’s annual Light Up A Life candlelight vigil held at the San Luis Obispo Mission on a nippy, rainy evening. Names of those who have passed were read out loud during the hour service that included a choir. Later we carried candles outside for readings and prayers.

Light Up A Life Candlelight Vigirl, San Luis Obispo Mission, California

Anyone may pay a fee (fundraising) to have the name or names of loved ones read at Light Up A Life. This lovely event is repeated during one week in December in different cities of the county.

HSLO was created in 1977 and has an excellent reputation through word-of-mouth.

Services are provided without charge; no insurance company is billed. 

HSLO relies on community donations, fundraising events, grants, doula training fees, and the time of its over 200 volunteers.

Hospice of San Luis Obispo County is a remarkable operation.  So much goodwill!!  A great gift to the community.

The home which serves as office was bequeathed to HSLO by Dorothy D. Rupe; it bears her name.

1304 Pacific Street, San Luis Obispo,CA  93401  tel. (805)544-2266

http://www.hospiceslo.org/

HSLO is a member of the Better Business Bureau and is a Top Rated Non-Profit.

 

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

Death and Dying, End-of-Life Care, End-of-Life Planning, Green Burials, Home Funerals, Hospice, Los Angeles

Los Angeles Death & Dying Mavens Produce Educational Workshop June 2, 2018

Death Positive in Los Angeles, California

Thank you fine women of the Order of the Good Death, Undertaking LA, Going with Grace, and Death Doula LA  for all that went into producing an educational death positive seminar for colleagues and the public at Atwater Playhouse in northeast Los Angeles, June 2.
For those of us who have been attending the ill since childhood, witnessing both sudden and prolonged deaths, and advocating in our own quiet ways for natural, holistic, spiritual energy for end-of-life care (honoring the wishes of the person whose life it is before/during/after), your fresh, energetic voices are welcome!!
It was encouraging to witness Gen X-ers moving forth with generosity, and a sense of community spirit, and a pleasure to listen to your presentations conveying authenticity and dedication.
Death & Dying Los Angeles presenters Jill Schock, Amber Carvaly, Alua Arthur

What transpired at the unusual gathering?

The engaged audience of 50 colleagues and others got to listen, meet, greet, and ask questions, based on experiences as family caregivers, hospice companions, end-of-life planners, and coordinators of arrangements for families. A few were contemplating a career devoted to end-of-life. Each person who participated has been drawn to end-of-life work through past circumstances (common among most of us).
Amber Carvaly, assisted by Susana Alba, also of UndertakingLA, demonstrates how to shroud
We met author and natural death mortician Caitlin Doughty of the Order of the Good Death and UndertakingLA; Caitlin’s associate mortician Amber Carvaly; end of life doula, end-of-life planner, and attorney Alua Arthur; and end-of-life doula Jill Schock who is also a hospice chaplain.  These ladies, age 40 or under, are passionate and powerful and demonstrate strong skills related to their work. Their goal: educate the public about green/natural alternatives and choices available at death, and, share why planning ahead can save energy, time, $$, and grief.
What pleased me most is discovering that even though the ladies make their living this way, they do not seem to be commercial.  Their focus is on giving back, and being present for the ill and their families. I also admire their ability to get the word out effectively.
They offered up-to-date information about California state laws and regulations, medical forms, home funerals, death duties, their experiences as morticians or alongside the dying, and, various options for burial, etc.

A worthwhile event and recommended for anyone interested when they host another seminar.

Wendy Jane Carrel, Senior Care and End-of-Life Planner, Mexico; Caitlin Doughty, author, founder of Order of the Good Death, and UndertakingLA
The photo above demonstrates Caitlin’s marvelous sense of fun. Her best-selling books, which I recommend, reveal her unique humor (find When Smoke Gets in Your Eyes, and, From Here to Eternity). Even though she sat in the audience during the presentation, she actively participated with the three main presenters (her colleagues), as well as the attendees.
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.
Death and Dying, End-of-Life Care, Hospice, Humanitarian Rescue Older Adults, Mexico, Palliative Care, Palliative Care Mexico

Sacred, Dignified Death in a Mexican Palliative Care Hospital

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.

mural at entrance to Juntos Contra el Dolor
Mural at entrance to Juntos Contra el Dolor, palliative care hospital and hospice, Guadalajara, Mexico

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.

Rest in peace dear Rogelio.

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

How Caregiving A Dying Husband Taught a Journalist Appreciation for Living

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

Tracy Grant, Deputy Managing Editor, Washington Post

http://www.pbs.org/newshour/tag/tracy-grant/

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

Mexico Palliative Care Non-Profit Holds Festive Fundraiser in Super-Competitive Environment

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.

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Administration volunteer Michele Carrillo, Madre Martina Zumaya Head of Nursing, Dra Susana Lua Nava founder, Dra Karla Rebollar of Juntos Contra el Dolor A.C.

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.

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Four social workers, two MD’s (far right), all Juntos Contra el Dolor volunteers

Juntos Contra el Dolor held its annual fundraiser, a Fiesta Mexicana gala, on Saturday, September 24.

The nuns and volunteers led by Dra Susana Lua Nava proved to be creative and super organized.
Every detail was attended to – philodendron plants, potted geraniums, Viva Mexico banners, red/green/white flags hanging from the ceilings, red/green/white bow ties over white blouses or shirts so people would know who the volunteers were, donated chocolate cake from one of the best bakeries in town, clean white table cloths and chair covers, a tequila bar, a hand-made hot organic corn tortilla corner, and a place for photos where guests could dress like a revolutionary from the Mexican independence. Fresh quality food included 10 guisados (entrees) prepared with love and served in Mexican pottery, a rarity at charity events in Jalisco. And, there was a romantic singing group Los Bohemios, plus an all-girl mariachi band dressed in hot pink and silver!!  A lively event and fun for all.
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Sweet volunteers Lola, Maria, and Nena
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Volunteer Juan with his lovely, sensitive mother – his father, her husband, passed away at Juntos Contra el Dolor in June 2016
beautiful Mexican ladies of the San Bernardo parish
beautiful Mexican ladies of the San Bernardo parish
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junior guests
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All-girl mariachi band from Guadalajara

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).

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

 

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

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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.

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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 travel to Argentina, Chile, Cuba, 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.”