Palliative and Hospice Services and Specialists

The data presented here document the limited availability of hospice and palliation among the 6 million people of the English-speaking Caribbean. The slow response time of participants is typical of Caribbean norms in both professional and social contexts. The numbers of facilities and specialists in each nation cannot be attributed solely to population size or level of industrial development. St Lucia, for example, is larger and wealthier than Grenada but has neither a facility nor a specialist, and although SVG resembles Grenada in population size and industry, it has a facility and several specialists.

Misunderstanding and misinformation about hospice, palliation, and opioids is common in the Caribbean, even among health professionals^{Footnote 19,Footnote 20,Footnote 21} and may contribute to overrepresenting the availability of these services. Such misunderstanding may also help to explain why some nations report having a hospice but no specialist. Many Caribbean health systems host visiting physicians in various specialties, however, so those that do not employ a palliative specialist may sometimes host visitors with that expertise. It is likely that the healthcare professionals at the institutions hosting visiting palliative specialists learn from, and attempt to improve, related aspects of care, but their ability to do so effectively remains hampered by a lack of resources, infrastructure, and expertise.

Some Caribbean patients have difficulty accessing medical care due to disabling conditions or pain, and/or lack of transportation. Confronted with a health system that can do little for them, many terminally ill patients are released from the hospital and/or choose to die at home, where they can be cared for by loved ones, but where they receive little or no pain relief or medical or nursing support.^{Footnote 22} In low-income nations, dying at home may offer greater comfort and quality of life than in a hospital.^{Footnote 23} Although not conclusive, anecdotal reports and the data presented here suggest that health services for patients dying at home in the Caribbean are minimal.

Pain Protocols and Opioid Medications

Pain relief is only one component of hospice and palliative care, but it significantly improves the physical and mental health of patients, caregivers, and loved ones. About 80 percent of terminal cancer patients worldwide suffer moderate to severe pain, and 80 percent of these patients have no access to pain medication.^{Footnote 24} Early and aggressive pain relief can minimize suffering; reduce time off work; reduce healthcare costs; and improve longevity, physical independence, relationships, sleep, and satisfaction with medical care. The World Health Organization’s three-step analgesic ladder for treating pain is safe, effective, and relatively inexpensive, but many health systems in developing countries are reluctant to adopt it, leaving millions of people to suffer needlessly.^{Footnote 25}

A 2010 report from the International Narcotics Control Board (INCB) notes that although some countries have reported increases in their use of oral morphine and other opiates to treat pain, these increases are inadequate for effective pain relief in those nations; global medical needs for opiates are not being met, particularly for cancer pain; and impediments to the availability of opiates include the interpretation and administration of related laws and regulations, fear of addiction among professionals and the public, and lack of training about their use.^{Footnote 26} That INCB report also calls on governments to examine their methods of assessing medical needs for opiates; to evaluate procedures, laws, and regulations that hinder opiate availability; and to develop policies, guidelines, and professional education to improve the availability of opiates for medical use.^{Footnote 27}

National per capita consumption of morphine for medical use is a standard measure of undertreated pain, and Caribbean consumption is well below the global mean.^{Footnote 28,Footnote 29} Our data do not support the view that having a protocol for pain or end-of-life care is consistent with higher morphine consumption, but our data may reflect respondents’ limited understanding and/or implementation of such protocols. Our findings about how often oral morphine is replenished suggest that, as reported elsewhere^{Footnote 30,Footnote 31,Footnote 32} and anecdotally, Caribbean health systems are understocked and sometimes run out.

Opioid analgesics are strictly regulated in the Caribbean, and there is a widespread concern among health professionals about the possibility of addiction to, and misuse and abuse of, opiates. Although in most CARICOM nations oral morphine is sometimes available, it is not reliably available in quantities adequate to relieve cancer pain among their populations. Some of these nations do not consistently provide annual reports on per capita consumption to INCB, and this challenges INCB efforts to monitor, or encourage, its use. These inconsistencies may reflect the limited resources and infrastructure needed to compile and maintain data and/or poor time management in a system that is short staffed. They may also involve political appointments of the ministers of health, CMOs, or chief pharmacists who are responsible for procuring opiates for medical use and reporting annual consumption data to the INCB.

The Caribbean Context

Socioeconomic and cultural influences in the Caribbean bear on the willingness to prescribe opiates and to report, assess, and prioritize pain.^{Footnote 33,Footnote 34,Footnote 35} Although the socioeconomic status in middle-income nations is significantly greater than in low-income nations, it is significantly lower than in wealthy ones, and this affects medical and nursing care and curricula. Socioeconomics impinge on what medications and modalities of care are routinely available, the level and number of staff members per shift or department, the existence of systems to hold staff and administrators accountable for their actions or inactions, the ability to digitize and manage medical records, educational opportunities for staff and administrators, space for confidential discussions with patients, and even the availability of a doctors’ lounge. Such working conditions create countless practical and ethical challenges and contribute to burnout; undermine professionalism, compassion, and empathy; impinge on the willingness to believe patient self-reports of pain; hinder the creation of opportunities for continuing education and professional development; and perpetuate overly restrictive narcotic regulations and misinformation and bias about the medical use of opioids.

Human nature is such that cultural and social norms evolve over time as groups adapt to changing socioeconomic, environmental, and other conditions. Among Caribbean clinicians and patients, the traditional norm is to accept pain as something beyond control. Much of Caribbean culture, social life, and tradition centers around communities of family and church. The inadequate medical response to pain thus contributes to the widely accepted view that pain is God’s will. Many Caribbean patients are left with nowhere to turn but traditional bush medicine or herbal remedies, faith, and prayer.^{Footnote 36,Footnote 37} The limited availability of palliative and hospice care confronts even Caribbean physicians, nurses, and their families and friends, who also have little choice but to endure untreated or undertreated pain.

Attitudes toward pain among Caribbean physicians are evolving due to their increasing exposure via the Internet and cable television to the expectations of healthcare in North America and Europe; to the standards, communication skills, and work ethic of visiting clinicians; and to occasional opportunities to train in clinical institutions in wealthier nations. Many Caribbean physicians are conversant in bioethics principles including respect for persons, beneficence, and justice, but their ability to apply these principles consistently in patient care is challenged by limitations of resources and infrastructure, and sometimes by related dysfunctional relationships and hierarchies within their health systems.

Even when Caribbean doctors prescribe opiates for hospitalized patients, nurses sometimes withhold them from patients, or wait until the patient shows signs of suffering.^{Footnote 38,Footnote 39} One way to overcome such behavior is to reduce related bias and misinformation by incorporating end-of-life issues and guidelines on the use of opiates into medical and nursing curricula.^{Footnote 40} Online tutorials are part of a successful palliative care intervention in Columbia^{Footnote 41} and may be a useful strategy in the Caribbean and other middle-income nations.

Beneficence

The principle of beneficence requires doctors and other health professionals to comfort patients and to attempt to relieve their pain and suffering. At one time, beneficence was manifested by spending time with patients, listening to them, and holding their hands to offer comfort, reassurance, and maybe even solidarity in our shared human condition. In wealthy nations, spending time with, and comforting, patients is less frequent than it once was, and doctors’ focus has shifted to the multitude of new and advanced technologies for diagnosis and treatment. The current trend in the United States seems to encourage doctors to prioritize technology over the art of medicine, which traditionally centered on the way in which doctors demonstrated their knowledge about, and compassion for, each unique patient and the patient’s condition and needs. This conception is shifting from the doctor-patient relationship toward the relationship between doctors and technology, and how doctors use technology to improve statistical and/or institutional outcomes rather than patient outcomes.

Based on informal discussion, anecdotes, and observation, it appears that the best Caribbean doctors are well known, respected, and liked by their colleagues and patients in their own nations, and also across the wider Caribbean region. These doctors demonstrate a strong work ethic and interpersonal skills that enable them to work effectively with teachers, patients, colleagues, and supervisors. In the absence of technologies available elsewhere, they still, today, spend time getting to know their patients and patient concerns, and trying to disclose information to patients in ways that each patient can understand, regardless of socioeconomic or educational background. They are respectful to patients, nurses, and colleagues; concerned with ensuring that patients know how to manage their condition and take prescribed medications; willing to express uncertainty about their diagnoses or management of a patient; and able to maximize the resources available to them for patient care. These exemplary doctors constitute only a small group across the Caribbean. Whereas many of the others work hard and accomplish some of these things, some are sometimes less respectful and communicative than they could be. This may stem in part from working with limited resources and infrastructures, and also from the historic emphasis on paternalism in the Caribbean, developed at a time when there were too few resources to offer patients options and choices about their care. In many situations, this likely benefited some patients, but today, with the growing awareness of bioethics in the Caribbean, paternalism is slowly being replaced with respect for persons. Few Caribbean healthcare institutions, however, have efficient systems for obtaining or evaluating statistics on doctors’ performance, patient outcomes, or patient satisfaction; for holding clinicians accountable for their actions or inactions; or for establishing knowledgeable, reliable, and transparent ethics committees.