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.”