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Table 4 Data Extraction Table

From: The needs, models of care, interventions and outcomes of palliative care in the Caribbean: a systematic review of the evidence

Study/Caribbean Island Aim and design Participants/setting Main findings Quality score
Hariharan et al [27] 2003 Barbados To analyze the characteristics of moribund patients in a surgical intensive care unit (ICU) and highlight the dilemmas inherent in treating such patients.
Cross Sectional Survey
n = 30, patients in a surgical ICU, deemed to be undergoing futile treatment The majority of patients, even after the futility of treatment was established, withdrawal of any form of therapy was not attempted. Factors influencing the decisions on futility of care were: age of the patient, legal considerations, family influences and surgeon’s refusal to accept futility in a post operative patient.
Age:
Withdrawals of no forms of therapy were made in seven brain dead patients under the age of 30 years. In eight patients who were unresponsive after laparotomy, the four patients above 80 years, some form of therapeutic intervention was withheld. In the four patients who were in their sixties no support was withdrawn.
Legal considerations
Medico legal cases received more therapeutic support than non medicolegal cases.
Family influences
In 24 cases where family had hopes of their relatives recovery and requests to surgeons contributed to the maintenance of therapy. In two cases, there was fear of litigation on withdrawal of therapy since the patient’s relatives live abroad.
Surgeons refusal to accept futility of care in the post operative patient.
Support was continued on 12 patients based on the surgeons inability to accept futility of care
Quantitative score:0.80
Kreitzschitz et al [28] 2003 Grenada To explore the end of life concerns in the Caribbean among health professionals and people who had lost a loved one.
Qualitative Study
n = 32 (24 caregivers and 8 health professionals) Caregivers
More than half of the deaths of the patients occurred at home as reported by the caregivers. The themes uncovered were:
Place of death
The participants revealed that many of the deceased preferred to remain at home.
Pain and Suffering
Participants responses to pain and suffering of their deceased relative included:
“pain and suffering is a must”, “there was a time when I thought she (my wife) was going to die because she had so much pain”, “bore her pain well, but whenever she was in great pain you would hear it”, “he was afraid of the pain” and some spoke about emotional pain the deceased expressed due to regrets, becoming a burden or loss of independence.
Sources of support for the deceased and their caregivers
Participants were unaware of the ways by which dying patients or their families could obtain counselling, financial assistance or help with home care.
Almost all participants mentioned spirituality as a means of support
Use of herbal or traditional medications
No participants reported the use of traditional medicine near the end of life.
Concerns about end of life care
Many caregivers mentioned financial debts from medicines, treatments and/or the funeral. Participants complained about nurses, stating: “some of them were very harsh…my sister is a nurse. Every time she was there they treat him better…well everybody work under stress, not enough pay. I don’t blame them”.
Health professionals narratives
Nurses thought most patients die at home. Expressed that assistance for dying patients is limited: “there is no real policy in place for that kind of thing”, “we do not have an official, like support services, but we do have a hospital chaplain” and “facilities need improvement, more social workers, improved treatment to extend lives, more readily available care.
We give lots of pain medications. Sometimes we run out, but rarely.”
Nurses thought they are not hostile but remarked: “patients don’t tend to follow rules. I make sure they follow the doctors prescription and maintain the patients’ visiting hours, and I don’t think they like that.. we are short staffed”, “with a dying patient we try and make the patient feel as comfortable as possible.”
Others thought compassionate care is hindered by low salaries.
Physicians opinions
Thought home care is often better than hospital care due to lack of hospital resources. One doctor pointed out that although dying persons abroad receive more pain relief, Caribbean people tend to “believe that illness is a god given destination, so they don’t mind suffering. They believe that maybe it was something they did, and it is a question of almost purification before they go beyond. So they accept it.”
They expressed concerns about nurses’ low salaries and long working hours.
Nurse to patient ratio makes is difficult for nurses to see dying patients at home.
Also, lack of cars for the nurses hence they may need to walk to a patient’s home which is time consuming.
Qualitative score:0.70
Torres Vigil et al [29] 2006 Cuba To assess the quality of advanced cancer care in five Latin American countries.
Cross Sectional Survey
n = 76 (health practitioners : physicians and nurses) The policy barriers identified to optimal advanced cancer care were (ranked in order of top priority identified by respondents):
1. international restrictions on the import and export of medications
2. fear of diversion of opioids to illegal market
3. palliative care is not a priority in health care education
4. restrictive prescribing related laws and regulations
5. palliative care is not a priority in formulation of a health care policy.
Quality of care, access to care and affordability of care were all assessed as good for the appropriateness of advanced cancer care.
Quantitative score:0.89
Torres Vigil et al [30] 2008 Cuba To determine health care providers’ assessments of the quality of advanced cancer care in Latin American Medical Institutions: Cuba and to determine which factors were most predictive of the provider’s assessments of the quality of advanced cancer care in their institutions,
Cross-sectional survey
n = 76 (health practitioners : physicians and nurses) Availability of end of life services and access to cancer care in practice settings were identified as predictors of the quality of advanced cancer care in practice settings.
Strong positive associations between the report of institutional availability of key opioid analgesics and higher quality of care ratings.
The specialty of the provider was related with the quality of care ratings.
Barriers to optimal cancer pain management predicted the quality of care ratings.
Respondents who cited “medical staff reluctance to prescribe opiates” as a top barrier, provided quality of care assessments that were much lower than those who did not identify this as a top barrier.
The use of the WHO three step analgesic ladder for cancer pain relief was positively associated with higher ratings of quality of care
Quantitative score:0.94
Justo Roll et al [31] 2009 Cuba To explore the palliative care needs of Cuban patients with advanced cancer.
Cross Sectional survey
n = 91 (patients) The most burdensome complaints as assessed by the POS for patients were:
• Wasted times on appointments
• Patient anxiety
• Family anxiety
Metastases were significantly associated with a worse score for pain, personal anxiety and family anxiety.
Patients who were aware of their diagnoses had better scores with regards to symptoms, patient anxiety, information and support.
66 % of patients with high pain scores were not receiving strong opioids.
There was a discrepancy between the amount patients wished to know and the amount they were told.
Quantitative score:0.89
Gayle et al [32] 2009 Jamaica To document Quality Of Life and the predictive factors in a cohort of patients with End Stage Renal Disease in Jamaica.
Cross Sectional Survey
n = 110 (n = 70 patients from a tertiary hospital based outpatient haemodialysis centre (UHWI) in Kingston, Jamaica, n = 40,patients with end stage renal failure from a privately owned haemodialysis centre (DARU) in Kingston, Jamaica) Self administered Kidney Disease Quality of Life –Short Form Questionnaire was used.
Quality of life scores for disease targeted areas and general health scores
UWHI and DARU had good quality of social interactions and social functioning domain scores compared to the reference population. However, both cohorts had significantly worse burden of kidney disease scores than the reference population.
Physical functioning domain scores in DARU cohort of patients was below that of the reference population.
The domain of emotional role was significantly reduced in the DARU cohort of patients.
Patient satisfaction scores were significantly low in both cohorts.
In the Jamaican cohort, younger age, race, higher urea reduction ratio and higher serum haemoglobin predicted higher quality of life scores.
Higher income bracket reported better quality of social interactions and energy scores.
Higher dialysis staff encouragement and patient satisfaction scores were noted in those with health insurance coverage.
Quantitative score 0.78
Spence et al [33] 2010 Jamaica A needs assessment survey of cancer patients in Jamaica.
Mixed Methods Study
n = 159
(Patients = 81, caregivers = 51, health care professional = 20, informants of the local community = 7). They were interviewed using semi structured interviews.
There were also 4 focus groups each consisting of 8–12 participants
Patients
Barriers to seeking treatment:
1. Consultation experiences with health professionals
Themes of mistrust and poor communication with healthcare practitioners were found as barriers to seeking medical attention. Patients felt the long waiting times, lack of understanding of their diagnosis and disrespect from health professionals’ discouraged them from seeking medical attention. It was felt this may help explain why some people seek treatment from bush doctors and spiritual healers. These alternative practitioners provide quick and simple advice and were more approachable according to participants.
2. Folk wisdom/myths/lack of understanding person’s fears, lack of knowledge and belief in folk wisdom play a role in late presentation or delayed access to healthcare facilities for suspected cancer related illnesses.
A diagnosis of cancer is often viewed as an immediate “death sentence”. Beliefs such as “only evil people get cancer” and that cancer is a form of “god’s punishment” or cancer is a curse are held. These beliefs cause patients to believe that “obeah” (refers to “witchcraft, evil magic or sorcery by which supernatural power is invoked to achieve personal protection or the destruction of enemies”) was the way to treat these disorders.
Some patients believe there is a stigma attached to certain cancers, for instance cervical cancer may be linked to sexual promiscuity or prostate cancer heralds threats to masculinity and sexuality.
3. Financial barriers
70 % of the patients identified lack of financial resources as the single most important factor for non compliance with treatment regimes.
Needs of patients and caregivers
1. Need for financial support, 69 % of patients interviewed reported problems paying for cancer treatments.67 % state the inability at times to afford medications.
A small percentage of patients identified that transportation costs hindered visits to health care facilities.
Focus group participants suggested financial difficulties arise because the illness affects the ability of the patient or caregiver to work.
Patients are also concerned about the long term financial stability of their family, so reluctant to put all resources towards their own healthcare.
The inability to access affordable and nourishing foods were barriers to the patient’s ability to enjoy a fair quality of life.
2. Need for access to pain medication and other medicines, 42 % of those experiencing pain or discomforts were not currently taking any form of prescription medication.
75 % of caregivers identified pain management as the most critical need of the person for whom they were caring.
3. Need for home care support 31 % of the patients interviewed expressed a preference for home care, 46 % for in-hospital care and 21 % indicated no preference.
They cited a preference for hospital care since the majority identified better care in the hospital and inadequate home care provisions. 1 % of caregivers stated a preference for their relative to be cared for at home.
4. Need for emotional support and counselling and education,
Participants of the focus groups and alternative health practitioners spoke in detail about the need to offer ongoing emotional, spiritual and social support to patients and their caregivers. However, the patients (79 %) interviewed by the survey, suggested that they felt supported by family and community.
Focus group members expressed the need for education to dispel misconceptions about cancer, to understand the diagnosis and different treatment options.
Needs of healthcare providers
Majority of the respondents thought that the capacity to deliver effective care to the terminally ill was impeded by breaches in government support at both regional and national levels.
They felt that there were no strategies, protocols or policies in place for palliative or home based care in the region. They also felt there is a lack of appropriate training in palliative care. Many practitioners were poorly informed as to what palliative care is or what it could offer.
They also pointed out restrictive government policies over access to certain analgesics as a challenge to deliver adequate pain relief.
Quantitative score:0.5
Qualitative score:0.8
Cleary et al [34] 2013
Anguilla
Barbados
Dominica
Dominican Republic
Jamaica
St Lucia
Trinidad and Tobago
To determine formulary availability and regulatory barriers to accessibility of opioids for cancer pain in the Caribbean.
Cross Sectional Survey
The data were collected from physicians working in the field of palliative care. It was difficult to determine the number of participants who were from the Caribbean since the data from the Caribbean and Latin American were summated together. Data submitted from two or more field reporters from each country and rechecked by the principal investigator. Formulary Availability of different opioids (formulations of codeine, immediate release morphine, controlled release oral morphine, injectable morphine, oral immediate release oxycodone, transdermal fentanyl and oral methadone) were looked at.
The deficiencies in availability of the opioids and regulatory barriers were described below for each country presented in this paper.
Anguilla does not have injectable morphine
Dominica and Trinidad and Tobago reported to have no Immediate Release oral morphine
Dominica has no codeine and controlled release oral morphine available
Oral release oxycodone is not available in Barbados, Dominica, Jamaica and Trinidad and Tobago.
Oral Methadone isn’t available in Dominica, St Lucia and Jamaica
Transdermal fentanyl isn’t available in Anguilla, St Lucia, Dominica and Trinidad and Tobago
Anguilla reports with the availability of the Immediate Release oral Morphine on the formulary, it was only available occasionally.
Anguilla does not allow outpatient prescribing of opioids.
In Anguilla, family doctors require special authority to prescribe opioids and surgeons are only allowed to prescribe in an emergency.
Anguilla, Jamaica and St Lucia allow nurse prescribing with special permit.
Pharmacists can prescribe opioids with special permit in Anguilla alone.
In Jamaica and Dominican Republic, the limit of the prescription filled for opioids is 10-15 days.
Jamaica, Barbados and Trinidad and Tobago have the use of stigmatizing terminology in the regulations for opioid analgesics.
Jamaica, St Lucia and Trinidad and Tobago allowed Pharmacists to accept emergency prescriptions as well as for the pharmacist to correct technical errors.
Anguilla, Dominican Republic, Jamaica and St. Lucia only allow dispensing of opioids from hospital pharmacies.
Quantitative score: 0.83
MacPherson et al [35] 2014
Antigua and Barbuda
Barbados
Grenada
Jamaica
Montserrat
St Kitts
and Nevis
St Lucia
St Vincent and the Grenadines
Trinidad and Tobago
To document the availability of Hospice and palliation in the English speaking Caribbean.
Cross Sectional Survey
n = 10
(Chief Medical Officers or their designees or presidents of their national medical association were asked to complete the survey from each country). The professions of these executives were not revealed.
Description of hospices or palliative facilities and palliative care specialists amongst certain Caribbean Islands
Trinidad and Tobago has 2 private facilities (hospice or palliative facilities) and 2 palliative care specialists.
St Vincent and the Grenadines has 1 public facility and 3 palliative care specialists.
Jamaica has 1 public and 1 private facility and 2 specialists.
Montserrat has 1 public facility and 1 specialist.
Antigua and Barbuda and Barbados report 1 public facility and no specialist
St Kitts and Nevis report 1 private facility and no specialist.
Grenada and St Lucia report no facilities or specialist.
The author suggested that 4 respondents have some form of home care provision to terminally ill patients. The names of these islands were not provided.
Pain Protocols Antigua, Barbados, St Lucia and Trinidad and Tobago report having “a protocol for pain management, hospice or end of life care”.
Oral Morphine All respondents indicated that oral morphine was medically “available to treat mild or severe pain”
Education on Palliation or Hospice
Author suggested five countries reported one or more “workshops or educational programs on palliative care.” These countries were not identified.
Quantitative score:0.57