Eduardo had been diagnosed with renal failure and was on dialysis. He spent hours a day in the hospital and used this time to visit with patients who were dying. He was struck by patients who lacked the support of family and friends and had to face dying alone. He did what he could, visiting with them and he knew there were others who would be willing to do the same but felt that they did not know how. How does one provide support to someone nearing the end of their life? This is the question he posed to Canadian doctor Marcelo Garcia, not knowing that he was a palliative care specialist and educator.
Dr. Garcia returned to Canada with Pastor Eduardo’s question spinning in his head. How could he help people in Cuba learn to accompany the dying? He spoke with Margaret Clarke, Executive Director of Hospice Palliative Care Manitoba (HPCM) at the time, and she connected him with Carol Macpherson, a palliative care nurse with HPCM, who was coordinating care for people living with advanced illness and people requiring grief support following death. She also helped educate volunteers on how to companion individuals who were dying and those who were bereaved.
Carol was excited about the project and lept at the opportunity to help; an attitude shared by the four others who soon joined the team. Carol’s friend and colleague Ann Ediger, a community palliative care nurse and volunteer educator with HPCM was the first to be approached. She was in. Irene Suderman was the next to join; she too was a volunteer with HPCM and was fluent in Spanish having lived for a time in Colombia. Carol’s husband Michael Johnson also joined the team. He had experience companioning with people at end of life as a volunteer through HPCM and had a special interest in spiritual care.
They worked together, each using their unique skill set to prepare materials and making arrangements with the Cuban Council of Churches committee Vida y Salud Comunitaria (Life and Community Health). This committee helped set up the sessions in which the team would offer education on how to provide palliative care and accompany the dying. They made their first trip in February of 2004, to Havana.
The team found quickly that it was not just volunteers who were coming to learn, it was medical professionals, physicians, medical students and nurses. Palliative care is developing in Cuba and although interest is high, many health care workers have not yet received formal education in palliative care. Professionals and volunteers alike overwhelmed Dr. Garcia and his team with their interest and enthusiasm for providing quality compassionate care to the dying. He and his team presented to 35 participants in Havana on their first trip, giving presentations in Spanish, translated by Dr. Garcia, and leaving behind an English Volunteer Education Manual developed by HPCM.
In 2010 when they came again, their team had grown to include Dr. Garcia’s wife, Patricia. Patricia undertook the majority of Spanish translation which this time included a palliative care manual that aimed to equip people to train others who were interested in caring for those with a terminal illness, mainly through visitation. Participation was high in Sancti Spiritus, Cuba and to supplement the presentations, the team gave each participant a package of course materials and to the Life and Health Committee they gave flash drives with copies of the manual and other resources.
On their most recent trip in April 2012, the team worked with 35 participants in Camaguey, this time prepared with 12 presentations, folders with course materials for each participant, and flash drives with photos and the presentations in Spanish so that participants could share what they had learned with others.
For Dr. Garcia, Carol and the rest of the team, the project has never been about lecturing or telling the local participants the ‘correct’ way to do things. It has always been conversational, about a mutual sharing of knowledge – sharing the collective knowledge that the team has about palliative care and offering support to the dying and their families, then letting participants take what they find to be useful and build on that. The warm atmosphere of laughter and sharing that filled the sessions is something that the team remembers fondly.
Over the years, it has been the participants’ enthusiasm, excitement and thirst to learn that has motivated the team to continue and has given evidence that their work is truly having an impact on the quality of care that end-of-life patients in Cuba receive. To date they have shared their knowledge with at least 98 registered participants, both professional and nonprofessional. Because of the strong foundation of knowledge that these participants received, they’ve put what they learned into practice and sharing this knowledge with others. EMAS Canada (http://www.emascanada.org/home.html) has provided the team with logistical support as it does with many other teams that provide medical aid and education in countries throughout the world .The Cuba Project is accomplished on an entirely volunteer basis, with some financial support coming in through donations but the majority being covered by each team member personally.