Death and Dying, Death and Dying Education, End-of-Life Education, End-of-Life Planning, Palliative Care

Palliative Care and End of Life Practitioners Gather Internationally and Locally Seeking Solutions for COVID Care, Social Disparities, and More

COVID has brought about loss of lives, economies, and untold devastation around the world.

It has also brought with it dedicated palliative care and end of life practitioners gathering for discussions about  how to improve healthcare inequities and offer psycho-social-spiritual support to patients, families, medical teams, and first responders for now and the future.

New alliances and friendships have been formed via Facebook, Webinar, and Zoom chats that may not have been forged otherwise.

In August 2020, I attended several gatherings. Below are highlights. Each exchange was a gift.

The Chaplaincy Innovation Lab lead by Wendy Cadge and Michael Skaggs at Brandeis University continues to host a remarkable gathering of chaplains and others. The Trauma and Spiritual Care meeting in August emphasized the value of chaplaincy during COVID.  We listened to moving stories about trauma created by the current medical model, especially for minorities, and the statement “racism is a public health crisis.”  Also of note were observations by Dr. Ayo Yetunde, a professor at United Theological Center of the Twin Cities, who focused her remarks on the trauma and stigmatization of growing up black in America. She spoke about moral injury and how “politicians traumatize us.”  Her newest book, to be released this fall is Black and Buddhist.  See https://www.unitedseminary.edu/academics/faculty/pamela-ayo-yetunde/ and http://chaplaincyinnovation.org/

The Elizabeth Kubler-Ross Foundation of Central Mexico.  Psychologist and end-of-life educator Wilka Roig in San Miguel de Allende produces monthly seminars related to death, dying, and grief. The August gathering was uncommonly interesting with Ken Ross, son of Dr. Elizabeth Kubler-Ross, as the guest. It was fascinating to learn about his mother, the Swiss doctor who spent her adult life in the U.S. devoted to continuing the hospice movement started by her friend and colleague Dame Cicely Saunders of St. Christopher’s Hospice, London. I have visited the Elizabeth Kubler-Ross library in Torrance, California at Dr. Ira Byock’s Institute of Human Caring but had no idea of the trials and tribulations of this remarkable woman’s life. Dr. Kubler-Ross was a Jungian, and a prolific author best known for Death and Dying, 1969. Ken was her caregiver for almost 10 years. He gave a loving, tender report that included amusing stories about how stubborn she could be. A revealing part of his talk was how most people interpret the five stages of dying or the five stages of grief literally, as fixed stages. He showed us circular graphs his mother created showing all phases are connected and that we go in and out of phases arbitrarily. There is no end.

Dr. Marcos Gomez Sancho, the pre-eminent thought leader for palliative care in the Latin world spoke on Facebook to over 700 physicians, nurses, social workers, psychologists, educators, and volunteers in North and South America from his home in Palma de Majorca, Spain. As anticipated his talk was well-planned and included music, paintings, and photos to illustrate his points. His presentation was “El Duelo Normal al Duelo Imposible”, normal grief to impossible grief, emphasizing “the cruelty” of dying alone without traditional support and the suffering of the patient, the family, and the medical team. Dr. Gomez’ website is: http://www.mgomezsancho.com/esp/index.php

I was honored to spend time with Dr. Gomez at the 2nd International Palliative Care Conference in Guadalajara in 2015 and last year when he was again the headliner at the 4th conference: https://wellnessshepherd.com/tag/dr-marcos-gomez-sancho/

Dr. Marcos Gomez Sancho, 2 August 2020

The National Association of Hindu Chaplains (NAHCA) A unique gathering of mostly Hindu Americans (14) with special guest Sanjay Mathur of the Hindu Temple of Rochester, NY. Moving stories by this tender-hearted man with compassionate presence. I could see why anyone would feel comfortable receiving his pastoral care. http://www.hindutempleofrochester.com/

Let’s Reimagine End of Life, based in San Francisco, has put a tremendous amount of energy into producing 700 “spaces” around the world, and 125 workshops. Congratulations to programmer Dara Kosberg. One of my favorite discussions included a small group of first generation Americans of Chinese, East Indian, Korean, and Thai descent discussing how to talk to their parents about planning end of life, a culturally taboo subject. On August 31, founder Brad Wolfe, a Stanford educated entrepreneur and artist hosted a chat with palliative care physician Jessica Zitter (also author and filmmaker), Pastor Corey Kennard, and grief author Hope Edelman. I loved the breakout sessions where a marvelous synchronicity introduced me to Jessica’s lovely mother Rhoda, and two colleagues whom I hope to stay in touch with – international end-of-life doulas Glynis German of Mallorca, Spain and Merilynne Rush, RN of Michigan. They both also host Death Cafes. Small, meaningful world.  https://letsreimagine.org/

Heartfelt thanks to all those mentioned above who dedicate their lives to the well-being of others, and who are so willing to share what they’ve learned.  And heartfelt thanks to all others engaged in these activities and are not mentioned.

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.

dscn0330
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.

dscn0239
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.
dscn0243
Sweet volunteers Lola, Maria, and Nena
dscn0332
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
dscn0284
junior guests
dscn0319
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, 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