By Dr. Dingle Spence, IAHPC Board Member
“The Caribbean — there is more to us than just the beach!” I remember saying this to our Executive Director, Liliana De Lima, when we first met at a palliative care conference, in 2007. A less well-known side of life here is our high death rates from cardiovascular disease and cancer.
Since 2007 we have “come a far way” in the Caribbean in terms of regional collaborations and recognition of the urgent need to build capacity in order to provide much-needed palliative care and relief of serious health-related suffering to our people. Although most palliative care services are still isolated, and no country yet has full integration of palliative care into its health system, the awareness of the need to develop new services and to expand existing ones is starting to gather momentum.
Large numbers of patients in the Caribbean present with advanced disease, and, worryingly, these numbers are increasing. With the rise of the Internet and social media many patients — in particular, young women with breast cancer — choose to pursue alternative medical treatments and eschew conventional cancer therapies, such as surgery, chemotherapy, and radiotherapy. Inevitably, they present late to the conventional health care system with incurable, locally advanced or metastatic disease. Little is known about absolute numbers of patients who make these choices, but anecdotally it is a phenomenon becoming more widespread. This increases the urgent need for better patient education, a move toward an integrative approach, and, ironically, for palliative care.
Existing palliative care services in the region include home-based hospice and palliative care delivered by not-for-profit or faith-based organizations in the Cayman Islands, Guyana, Trinidad and Tobago, Barbados, and Antigua. In Jamaica, however, palliative care is delivered by the public health care sector, with inpatient beds in one specialist hospital and outpatient clinics at two other hospitals in the capital of Kingston. Regional Ministries of Health are becoming increasingly aware of the need to incorporate palliative care into primary health care services, with a focus on community-based care delivered at home.
Building capacity, educating health care workers, and ensuring availability of essential medicines are the principal challenges in the Caribbean. These challenges have been taken up, in part, by the not-for-profit Jamaica Cancer Care and Research Institute (JACCRI), which developed and ran two five-day training workshops, in 2017 and 2018. These workshops were attended by up to 80 people from six countries, representing a variety of medical and paramedical disciplines. Moving forward, JACCRI is working with the School of Medicine at University of the West Indies to develop a Master’s level qualification in palliative care, and with the Ministry of Health in Jamaica to develop posts for trained persons to deliver palliative care in both hospital and community settings.
The Caribbean Palliative Care Association (CARIPALCA), a nascent regional body, launched its website in November 2019. CARIPALCA will serve as a platform to bring together palliative care communities and interested individuals across the region for education, collaboration on research initiatives, and information sharing. It is an exciting initiative in our palliative care landscape.
Little by little, those of us who can enjoy the sun, sea, and sand are also realizing that we have an ethical duty to respond to the suffering of our Caribbean brothers and sisters, and I believe we are well on the road to doing so.
Learn more about The Caribbean Palliative Care Association (CARIPALCA) in the IAHPC Global Directory of Institutions and Organizations.
By Carlos Roa Gama, MD
Throughout the world we are witnessing prolonged life expectancy and, not unexpectedly, a concurrent rise in the incidence and prevalence of chronic diseases. This, in turn, equates to an increase in the number of patients who require palliative care.
Palliative care is a medical approach whose need and importance has become more and more relevant because of prolonged life expectancy; our patients are becoming older and sicker. Although it is not a new type of care, it remains unknown to a great number of patients, and to a great number of physicians.
While our understanding in the treatment of our patients is in constant development, palliative care is not a new medical approach. However, few patients who need palliative care are offered this option.
Although anyone connected to the Internet has ample information within easy reach, we live in an era of disinformation in which a vast amount of the medical information we read online and via social media is not supported by scientific evidence. Hence the urgent need for qualified medical doctors with certified knowledge in palliative care to use social media for the well-being of patients.
Why is this so important?
It is well known that a patient who has full knowledge about their disease has a better outcome.
In my experience as a palliative care specialist for more than 10 years, I have seen how the digital era allows for a plethora of benefits. In the case of palliative care, a simple chat group can reduce the anxiety experienced by a patient and their family. Additionally, when my patients connect on social media and have access to reliable information, I receive fewer and fewer false-alarm phone calls. Ultimately, with social media we can improve how patients deal with their illness, as well as help bring physicians up-to-date with their patients’ evolution.