2016; Volume 17, No 7, July

IAHPC Traveling Scholars’ Reports

Inspiring change, raising awareness, sharing experience: Impact of the VIII Congress of the Latin American Association for Palliative Care

IAHPC co-sponsored the VIII Congress of the Latin American Association for Palliative Care (ALCP) held in Mexico City on 14-16 April 2016. Almost 600 participants from 23 countries in North America, Latin America and the Caribbean participated. We supported 21 participants from Argentina, Chile, Colombia, Costa Rica, Cuba, Ecuador, El Salvador and Mexico to attend the congress through our Traveling Scholarship program. Our traveling scholars gave oral presentations and posters that represented their diverse backgrounds: administration, nursing, healthcare systems, emergency care, geriatrics and spiritual care.

As a requirement of the scholarship, grantees are asked to give a glimpse of palliative care in their countries and how they hope to adapt some of the knowledge and experiences gained at the congress to their own settings. Here’s a selection of comments.

Dr. Javier Alexander Rojas Elizondo, San Jose, Costa Rica

In Costa Rica we have a network of pain control and palliative care that provides services to people in different parts of the country. It is a model that is followed by other nations and is considered to be a strategy that can improve the quality of life of the population.

The CCSS (Caja Costarricense de Seguro Social/Costa Rican Social Security Administration) currently has 45 clinics for pain control and palliative care. The differences between Costa Rica and other nations is that here pain control and palliative care are part of comprehensive care provided by the CCSS. Another uniqueness is that the country has established close links with community organizations, resulting in support and synergy that benefits the target population. But, unlike some other countries, care is offered almost exclusively to patients with terminal cancer.

One of the things I gained from the congress was awareness of experiences of other countries concerning degenerative diseases affecting the heart, lungs, liver, kidneys or brain, or chronic or life-threatening diseases such as HIV infection and drug-resistant tuberculosis. Challenges for the coming years will be about standardizing procedures and building up human resources.

Marco Antionio Rodriguez Paz, San Salvador, El Salvador

In El Salvador, the national healthcare system does not include a specific program for palliative care although a group of health professionals are developing a law for an interdisciplinary approach for cancer patients in which palliative care is included.

There is one small palliative care hospital, a charity founded by the Carmelitas Descalzas nuns, where I work as a psychologist along with a few other health professionals and nursing students who care for the patients.

Overall, the congress increased my knowledge of palliative care but one topic that stands out the most for me is the importance of spirituality at the end of life. I learned how crucial it is to conduct a psychosocial interview with palliative care patients in order to provide more holistic care. I learned how to create an interview protocol to discover a patient’s beliefs, awareness of their spiritual life, and how they have been looking for a sense of meaning in their life before and after a cancer diagnosis. I also learned about the importance of providing care and emotional support to carers and family members and plan to start a self-care group for primary carers.

Sharing information at the congress with professionals who volunteer in Argentina, and who implemented the first hospice center there, will help me to coordinate a group of professionals in El Salvador. The work in palliative care needs to be interdisciplinary and as a psychologist I can see a lot of barriers to providing holistic care for patients.

One is the lack of information or awareness of palliative care – most Salvadorians do not know the meaning of palliative care. So my challenge is to create public awareness of this service. Now, thanks to the information I gained from the congress, I shall be able to share my knowledge and create an awareness campaign.

Gloria Mabel Carrillo, Universidad Nacional de Colombia-Bogotá, Colombia

One of Colombia’s most important challenges is to raise awareness among healthcare workers about caring for people who are at the end of life – this is essential for family support, and counseling patients and their caregivers for proper hospital-home transition.

We also need to generate palliative care training in universities, develop updating courses on topics such as pain and symptom management, subcutaneous medication management, and ethical aspects of family and caregivers; consolidate programs in oncology and palliative care in other chronic diseases and in pediatrics, and build collaborative networks linking support staff, academia and business.

We need to define common research areas, strengthen publications in Latin America, explore qualitative research methods to capture the experiences of patients and families; develop research projects with funding from national and international agencies, and create international and national exchanges among academics through internships and short-term pairings.

It’s the first time I’ve participated in a Latin American Association of Palliative Care event. The experience has given me a greater awareness of ongoing and completed research projects; the chance to identify national and international academic peers who work in ​​palliative care; to share experiences on nurse training and to expand my knowledge of symptom management, skills training for human resources and ethical components of palliative care, among other issues.

Dr. Ximena Pozo Pillaga, Quito, Ecuador

The congress helped me to confirm my top priorities in palliative care: clinical work and management programs at the Government Health Department in Ecuador. It was useful to be in touch with people who are working in palliative care projects, and to get their wise recommendations. All the knowledge I’ve acquired has benefited me as a person, as a healthcare worker, and will be even more useful in developing the National Public Palliative Care Policy. Sharing management experience is invigorating and it was important to hear from people developing projects throughout Latin America and other countries.

One of my goals is to work on opioid access which is often difficult in Ecuador. We identified two ways of helping the Ecuador Health Ministry to solve this problem by working with the World Health Organization and other Latin American countries, such as Argentina. I am already putting my new knowledge into practice as I am working in a palliative care project in the Government Health Department.

This was an opportunity to share with people involved daily in palliative care and those who work all over the world as policymakers. Just knowing that a large group of people is concerned about wellbeing at the of end-of-life motivates you to go on with this work.

Margarita Chacon Roger, Havana, Cuba

In Cuba, I am involved in palliative care strategy. What I learned at the congress will help me in many areas. First, the update on best treatments and ways to achieve effective control of symptoms will help me as I continue to urge decision-makers how best to use resources and make more informed decisions about their effectiveness. Second, the knowledge gained will help me in preparing an action plan to implement the resolution of the 2014 World Health Assembly. To date, the Cuban program addresses only patients with cancer; now from what I learned at the congress I can see how we can incorporate all patients who need palliative care. I have also learnt about evaluating and improving the quality of palliative care to get more reliable statistics.

Taking part in the congress, and the knowledge gained, have enabled us to broaden the scope of our activities, to help us identify areas for improvement and to seek new ways to achieve greater impact. The congress has also allowed us to continue the exchange with other professionals and discuss areas in which we can work together.

Maria Jose Puga Yung, Valdiva, Chile

Palliative care in Chile has reached an acceptable level of development, with broad coverage and access to palliative care for cancer guaranteed by law. But much remains to be done.

Training in palliative care, despite being integrated at undergraduate and graduate level by many universities, is far from uniform and is not mandatory. Hearing about educational experiences in other countries (Argentina, Spain), and learning how others have solved the challenge (eg. Colombia) are remarkable examples that we can start working on. I acquired educational tools that will help me to improve and perfect the internship program (practice rotation for undergraduate medical students) in palliative care offered by the Austral University of Chile.

Non-cancer palliative care is almost non-existent in our country. It has been left out of the official Ministry of Health programs and no resources are allocated to develop it. Thus, hearing how other teams with limited resources have addressed the problem of non-cancer palliative care was enriching.

Finally, it was encouraging to see that many teams are doing research in palliative care with varying but inspiring results, despite the care burden, limited resources and time constraints.

And finally a few take-home messages from the congress

Motivation...

“It has been a wonderful opportunity to learn about the activities of palliative care in Latin America, sharing experiences to rethink the daily work I do in my work environment. I left the congress wanting to research, innovate and continue working in this specialty that I chose eight years ago.”

Felisa Mariana Pechenik, Buenos Aires, Argentina

Felisa is pictured in front of her poster with Dr. Roberto Wenk (IAHPC Past Chair and one of the pioneers of palliative care in Argentina and Latin America)

Courage...

“This Congress has given me the courage to want to study for a Master’s in Palliative Care. I am really thankful for the opportunity to get a scholarship – it was an amazing experience to have been with the best specialists in the field of palliative care and to feel welcome.”

Ines Francis Gomez Padilla, Navojoa, Mexico

Hope...

“The best thing of this congress is that other workers helped me to maintain the hope burning in my heart to make this a better situation, and improve on my area.”

Marina Alejandra Torres Hernandez, Bogota, Colombia

Opportunity

“This scholarship provides a great opportunity for doctors like me who don't have resources to attend events outside the country because of monetary problems. I think that it is a brilliant idea that helps to disseminate information and scientific exchange in Latin American countries.”

Mariuska Forteza Sáez, La Habana, Cuba

For reasons of space, we have published only a small selection of edited reports and comments.

To find out more about IAHPC’s Traveling Scholarships and Traveling Fellowships, please visit our website. Through these programs we support projects and individuals around the world, especially in developing countries in Africa, Eastern Europe, Asia and Latin America.

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