International Association for Hospice & Palliative Care

International Association for Hospice & Palliative Care

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Promoting Hospice & Palliative Care Worldwide

International Association for Hospice & Palliative Care

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"Promoting Hospice and Palliative Care Worldwide"


2004; Volume 5, No 8, August

IAHPC Regional Report - Cuba


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Dr Ivan Justo & Mrs Jennifer Kwakwa

In Cuba it is estimated that there are over 250 000 terminally ill patients. Most of them receive care at the primary health level from their family physicians, and also the vast majority will die at home and will receive assistance from diverse specialists in hospital or at home through the National Palliative Care Program.

This program was first created in 2000. It is not yet implemented all over the country and there is an urgent need for increasing care-givers’ knowledge about palliative care and how to provide services in view of the lack of resources, such as drug formulations, syringe drivers, etc.

Considering these circumstances, a Palliative Care course was organized for the first time in Cuba, in coordination with BESO, Help the Hospice, and Tomás Romay’s Policlinic. This course created an opportunity for Cuba and Britain to work together on this issue. After only one promotion, we received many requests from health professionals interested in the course. The keen interest of this initial response was later repeated again and again during subsequent teaching and meetings. It is very important to note that we received immediate support from the Health Ministry to arrange for a BESO palliative care teacher Mrs Jennifer Kwakwa from the U.K. to work here for a month. I had some knowledge of the English language, but I had never worked as an interpreter. So, since as a doctor I am familiar with medical terms, and due to my previous participation in international conferences in Cuba, I assumed the role of interpreter. We both ensured that translations were closest to its original content.

We had "good" conditions to teach in my policlinic: very effective air conditioning, four computers, and one laptop. We therefore opted to project slides in Spanish on the four PCs for the attendees, and Jennifer used the laptop with the English version at the same time as I translated her discussion. It was hard work translating all the materials into Spanish but was very necessary given that not all attendees were able to understand English. The first days were especially difficult as Jennifer and I sought to ensure we fully understand each other given the complexities of medical terminology and different cultural and philosophical approaches to palliative care of our very different countries. We also took time to discuss some minor changes in the program modifying it to precisely target the core issues in palliative care. Course participants belonged to a variety of specialty areas: doctors, nurses, psychologist, psychiatrists, social workers, surgeons, oncologists etc.

The program explored almost all aspects of Palliative Care, starting with the Cecily Saunders definition, W.H.O.’s definition; Jenny Kwakwa’s which included the aim for a good death:

"To enhance the living time left, to each and all those dying, to aim for a ‘good death’ and to help the carers (both family/friends and health professionals) cope during the dying stages and for the future"

Kwakwa J

Then we crucially defined the timescale of palliative and curative juxtaposition, terminal, and the last few days of life, issues. Topics covered included: symptom control, specific life limiting illnesses, breaking bad news, spiritual aspects, ethics, and euthanasia. During the lectures there often emerged confrontations between cultures, but this was beneficial for the participants because many of the mistakes or myths presently visible in our practice had already appeared in England, and this experience proved helpful in promoting good palliative care in our country. For example on the initial quiz, holistic aspects in palliative care were evaluated, and this reflected how different the approach is to dying patients in Cuba, and some therapeutic myths regarding the use of morphine, were explored. The discussion about the quiz was by itself an entire lecture, and it was so profitable that it was included at the beginning of all lectures. We identified breaking bad news as one of our main goals in promoting palliative care in Cuba. Cuban practice is to not tell the patient about the diagnosis, neither about the time limit of the disease, nor about cancer, "how to break bad news" was always an intense session because it pushed attendees to think about how common it is not to tell patients the truth, even when they requested it. Mostly the Cuban medical staff obeys the family decision of trying to protect the terminally ill person from suffering, and to protect themselves as well, frightened as they may be by mythical fears for example that the patient may commit suicide. In fact, we were showing evidence to the contrary - few patients committed suicide, and not knowing the truth is a major cause of suffering and leaves the patient without the opportunity of making decisions about the last period of his or her life. In the same way in the last minutes of all teaching was a short PowerPoint lecture titled, "If I were dying I would like…" in which critical aspects of care from the dying patient’s viewpoint were silently read, pointing to the need for a patient’s care to be carefully balanced between medical decisions, psycho-social decisions, family decisions, religions considerations, etc., and the humanistic perspective of those caring for dying patients.

During 27 days, from Monday to Friday, a total of 74 lecture hours were done in different health settings, including a two-week course in the Tomás Romay Policlinic, two day teaching in hospitals, visits to other policlinics, visits to a family doctor’s office, home visits to better understand palliative care patients’ situations in Cuba, a meeting at an international conference about palliative care organized by the IAHPC with North Americans participants, and a presentation by the head of the Cuban National Program in Palliative Care. This culminated in a request that we close this conference with our own short presentation and Jenny gave a brief overview of her experiences in Cuba and we finished by providing the silent audience reading (in first Spanish then English) of the patient’s wishes PowerPoint presentation. On the last day of the visit Jenny and I privately met with the head of the Cuban National Program in Palliative Care Dr. Jorge Grau and discussed many issues with regard to palliative care service development in both our countries. For example patient empowerment, family support, generic drug manufacture, evidence-based practice and the successful multi-disciplinary teaching.