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Current Breast Cancer Reports

, Volume 10, Issue 3, pp 157–169 | Cite as

Palliative Care in the Caribbean Through the Lens of Women with Breast Cancer: Challenges and Opportunities

  • Dingle Spence
  • M Austin Argentieri
  • Natalie Greaves
  • Karen Cox
  • Sheray N. Chin
  • Margo Munroe
  • Gemma Watson
  • Heather Harewood
  • Alexandra E. Shields
Global Breast Cancer (BO Anderson and C Duggan, Section Editors)
Part of the following topical collections:
  1. Topical Collection on Global Breast Cancer

Abstract

Background

Across the Caribbean, too many women are presenting with advanced breast cancer and dying with little or no access to palliative care. No comprehensive assessment of current capacity to deliver palliative care in the region exists, largely due to limited data. We assess the challenges in delivering palliative care for breast cancer patients in the Caribbean, highlighting the needs and experiences of low-income women through emblematic patient narratives.

Recent Findings

There is an urgent need to improve access to palliative care and pain relief throughout the region. Challenges include insufficient healthcare infrastructures to support cancer care, tremendous unmet need for palliative care, pervasive opiophobia resulting in limited access to opioids for pain relief, patients’ reluctance to engage with clinical care, and the widespread use of complementary and alternative medicines prior to the acceptance of conventional care.

Summary

There is an urgent need to improve access to palliative care and pain relief for cancer patients in the Caribbean. Strong regional collaboration, provider and patient education, improved access to opioids, and innovative models for palliative care that reflect the culture and resources available in the region have the potential to measurably improve palliative care delivery.

Keywords

Caribbean CARICOM Breast cancer Palliative care Community-based palliative care Opioids Complementary and alternative medicine 

Introduction

By the year 2030, an estimated 1.7 million new cases of cancer will be diagnosed in Latin America and the Caribbean alone [1]. In Caribbean nations, cancer is the second leading cause of death, second only to cardiovascular disease [2]. Breast cancer has an incidence rate that accounts for more than 26% of all cancer cases among Caribbean women each year, which is more than double the incidence rate for any other type of cancer in the region [3]. Unfortunately, it also has the highest mortality rate of all cancers in the Caribbean region—accounting for nearly 17% of all annual cancer-related deaths among Caribbean women [3].

This high mortality-to-incidence rate can be attributed at least partially to the high proportion of women presenting with metastatic disease. In Jamaica, for example, only 11% of women with newly diagnosed breast cancer have stage I disease and 33% of women present with stage III, compared to 48 and 12.4% in the United States [4]. Although there is consequently a much greater need for palliative care in these types of settings, no country in the Caribbean has yet to fully integrate palliative care into their health systems [5].

Across the Caribbean, there is an enormous unmet need for palliative care and for the attendant relief of serious health-related suffering. Even in 2018, too many women in the Caribbean are living and dying with advanced breast cancer with little or no access to palliative care and pain relief. In this paper, we assess the challenges of delivering palliative care services to women with breast cancer in the Caribbean, focusing on 21 countries that are members of the Caribbean Community (CARICOM), and outline a number of key challenges and opportunities that must be addressed in providing more robust and meaningful palliative care in the region.

CARICOM nations are, for the most part, island nations, and include Anguilla, Antigua and Barbuda, the Bahamas, Barbados, British Virgin Islands, Dominica, Grenada, Saint Kitts and Nevis, Saint Lucia, Saint Vincent and the Grenadines, Trinidad and Tobago, Jamaica, the Cayman Islands, the Turks and Caicos Islands, and Haiti. Although not islands, Suriname, Guyana and Belize are also members of CARICOM. Despite the fact that the majority of these islands are designated as upper-middle or high-income countries by the World Bank [13], all but a few have large segments of the population that are very poor, live in substandard housing, and lack access to timely and appropriate diagnosis, treatment and palliative care. Table 1 provides an overview of breast cancer statistics and key economic and health spending metrics for these CARICOM nations, with figures from the United Kingdom and United States included for comparison.
Table 1

Caribbean nation breast cancer statistics and economic profiles

Country

Age-adjusted breast cancer mortality rate (% of all cancer deaths)1*

Age-adjusted breast cancer incidence rate (% of all cancer cases)2‡

GDP per capita (2017)3^

Health expenditure per capita (2014)4**

Population in 2017 (in thousands)1

Anguilla

20.4

17

Antigua and Barbuda

31.4

26,198.4

1208.1

95

Bahamas

34.4 (2013) (M)

61.3 (ND)6++

25,079.6

1818.8

395

Barbados

28.6 (2013) (M)

94.7 (35%)

17,508.0

1014.0

292

Belize

24.3 (2014) (M)

39.6 (24.6%)

8341.3

488.7

375

Bermuda

7.7

90 (2012)7++

52,436.1 (2013)4

7107 (2016)8

71

British Virgin Islands

8 (19.0) (2010)5+

35

Cayman Islands

27 (29.7%) (2012)5+

49,903.0 (2011)4

58

Dominica

16.9

12,034.9

586.9

74

Grenada

38.3 (M)

14,779.5

728.3

112

Guyana

21.9 (2013) (M)

50.4 (26.3%)

8266.0

378.8

778

Haiti

11.5 (14.2%) (2012)2

22.0 (19.8%)

1819.1

130.8

10,981

Jamaica

18.6 (20.%) (2012)2

55.8 (30.9%)

9211.6

476.2

2890

Montserrat

65.2

5

St. Kitts and Nevis

34.2

26,848.9

1151.7

53

St. Lucia

16.2 (2014) (M)

13,579.3

698.3

165

St. Vincent and the Grenadines

21.6

11,623.0

916.6

102

Suriname

18.4 (2014) (M)

41.4 (24.2%)

13,934.8

978.6

563

Trinidad and Tobago

23.5 (2012)2

56.9 (31.4%)

31,153.8

1815.7

1369

Turks and Caicos Islands

53

US Virgin Islands

9.7

102

United Kingdom

41.15 (2014)9

204.93 (2014)9

43,620.4

3376.9

65,64810

United States

20.5 (2014)11

123.9 (2014)11

59,495.3

9402.5

324,460

*Rates are for 2015, unless specified. Rates are per 100,000 population. (M) = corrected rates for under-registration

Rates are for 2012 and are per 100,000 population

^GDP per capita is given at purchasing power parity (PPP) in current international dollars

**Health expenditure per capita is given at PPP in constant 2011 international dollars, except for Bermuda, which is given in PPP in current international dollars

+Not age-adjusted. Total number of deaths/cases and not rate per 100,000 population

++Not age-adjusted

1Source: Pan American Health Organisation (PAHO)/World Health Organisation (WHO). Health Situation in the Americas: Core Indicators 2017. Washington, D.C., United States of America, 2017

2Source: Ferlay J, Soerjomataram I, Ervik M, et al. GLOBOCAN 2012 v1.0, Cancer Incidence and Mortality Worldwide: IARC CancerBase No. 11. 2013; http://globocan.iarc.fr/Pages/fact_sheets_population.aspx. Accessed March 23, 2018

3Source: International Monetary Fund. Report for Selected Countries and Subjects, World Economic Outlook Database, October 2017; http://www.imf.org/external/pubs/ft/weo/2017/02/weodata/index.aspx. Accessed April 11, 2018

4Source: The World Bank. World Development Indicators. 2018; https://databank.worldbank.org/data/reports.aspx?source=world-development-indicators. Accessed April 11, 2018

5Source: Razzaghi H, Quesnel-Crooks S, Sherman R, et al. Leading causes of cancer mortality—Caribbean Region, 2003–2013. MMWR Morbidity and Mortality Weekly Report. 2016;65:1395–1400

6Source: Health Information and Research Unit, Bahamas Ministry of Health. Incidence Rates (per 100,000 Population) of Selected Cancers Princess Margaret Hospital Cancer Registry, Bahamas, 1998–2013. 2015; https://www.bahamas.gov.bs/wps/wcm/connect/36f3e89f-dc2c-48ad-afe2-e90a344785f6/Cancer+Incidence+1998-2013.pdf?MOD=AJPERES. Accessed April 11, 2018

7Source: Bermuda Ministry of Health. Health in Review 2017: An International Comparative Analysis of Bermuda Health System Indicators. 2017; https://www.gov.bm/sites/default/files/Health%20in%20Review%202017%2C%202nd%20Edition_2.pdf. Accessed April 18, 2018

8Source: Bermuda Health Council. National Health Accounts Report 2017: Bermuda health system finance and expenditure for fiscal year 2015–2016. 2018; http://www.bhec.bm/wp-content/uploads/2018/02/2017-NHA-Report-DRAFT-12-full-report-20180208.pdf. Accessed April 18, 2018

9Source: Smittenaar CR, Petersen KA, Stewart K, Moitt N. Cancer incidence and mortality projections in the UK until 2035. British Journal of Cancer. 2016;115(9):1147–1155. doi: https://doi.org/10.1038/bjc.2016.304

10Source: UK Office for National Statistics. Population Estimates for UK, England and Wales, Scotland and Northern Ireland: Mid-2012 to Mid-2016; 2018

11Source: U.S. Cancer Statistics Working Group. United States Cancer Statistics: 1999–2014 Incidence and Mortality Web-based Report. Atlanta: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention and National Cancer Institute; 2017

To date, there have been few studies on palliative care in the Caribbean. A recent systematic literature review identified only nine studies addressing any dimension of palliative care in the region [6•]. Several small, cross-sectional studies have been published assessing palliative care in Jamaica [7, 8, 9•, 10], Barbados [9•, 10, 11], Trinidad and Tobago [9•, 10], St. Lucia [9•, 10], Grenada [10, 12], Antigua and Barbuda [10], Montserrat [10], St Kitts and Nevis [10], St Vincent [10], The Grenadines [10], Anguilla [9•] and Dominica [9•]. However, no studies have been conducted on the British Virgin Islands, US Virgin Islands, the Bahamas, Turks and Caicos, Haiti, or the Cayman Islands. Furthermore, there are no extant studies that address the palliative care needs of women with advanced breast cancer in the region.

In our assessment of the challenges in delivering palliative care for breast cancer patients in the Caribbean, we will specifically highlight the needs and experiences of low-income women. These are illustrated through four key challenges that we have contextualised through emblematic patient narratives. The patients’ names have been changed, and the narratives are a composite of the experience of several different women.
  1. (1)

    Insufficient Healthcare Infrastructure to Support Cancer Care

     

Jacinth, 50, has worked as a domestic helper in Jamaica all her life. She and her four children live in a two-room house with a failing tin roof and no running water. She is the sole source of income for her family. Jacinth discovered a lump in her breast one day—it was not painful, so she did not think it was serious. About 6 months later, she started having a bloody discharge from the nipple and took an unpaid day off work to go to her local health centre. She was referred for a mammogram, but mammography is not available in the public sector, and it took her several weeks to save the funds to have the test at an imaging centre run by a local NGO. Following biopsy of the lump and diagnosis of breast cancer, Jacinth had a right mastectomy in the public hospital after a 2-month wait. A friend cared for her children while she was in the hospital. Upon discharge, the nurse scheduled a 3-week follow-up clinic appointment for her. She attended this visit, but the report from her surgery was not yet in, and she was told to return in 2 months’ time. She attended the second visit, but the physician could not locate her pathology report. One month later, she received a call on her mobile phone from the clinic telling her that the pathology results were in and she should come into the clinic to see the doctor. She was given her pathology results 6 months after her original surgery. A referral to the public sector oncology unit at another hospital meant another 4-month wait for Jacinth. By the time she was seen in the oncology clinic, almost 10 months since her original surgery, she had developed painful local chest wall recurrence and a right pleural effusion. She was admitted to the public hospital, had the effusion drained, and was discharged home without pain medications. In the community, her neighbours, unsure how to care for her in her pain, gave her cannabis, ‘bush tea’, and other home remedies. She died 3 months later, having suffered tremendously.

Any assessment of palliative care need for women with breast cancer in the Caribbean must address the limitations of healthcare systems more broadly. While many countries do have a health infrastructure that includes cancer screening and treatment, the wait to visit with a provider may be weeks or even months. Many countries do not have a mammography machine in the public sector, and when they do, they have limited reach relative to population need. Local studies in Jamaica have shown that very few women diagnosed with breast cancer had mammography-detected tumours; in fact, most had tumours that were large enough to allow self-detection (median size 3.5 cm) [14]. Similarly, there may be adjuvant therapy available in the public sector, but access is often so delayed that women whose breast cancer might have been cured are subsequently diagnosed with metastatic disease. In this context, making cancer care available in the public sector is not a final or complete solution—patients must be able to access this care in a convenient, timely and affordable manner.
  1. (2)

    Unmet Need for Palliative Care

     

Arlene is a ‘higgler’ who sells fruit on the side of the road at a busy bus stop in her rural community. She is a single mother, 35, and has a 7-year-old daughter. She is also the principal caregiver for her 70-year-old mother, who has a right hemiplegia and is not independently mobile. A neighbour watches her mother when Arlene is working during the day. Her daughter goes to the local primary school. There is no running water in their home and they use a pit latrine. One year ago, Arlene was diagnosed with triple negative breast cancer, with a fungating right breast tumour, and metastases to the bone. Unfortunately, the cost of having to travel on a regular basis to the city to access conventional oncology care was too great for Arlene and, instead, she tried using complementary and alternative medicine (CAM), including ‘bush teas’, and grated green papaya to dress the breast wound. She eventually presented to her local health centre when the pain became too much to bear. Arlene was referred to a palliative care unit in the city, a 2-hour drive from her home. After a 2-week stay, and feeling much more comfortable, Arlene is keen to get back home to her mother and daughter, but wonders how she will get to her local health centre for wound dressings three times a week, a $8USD return taxi ride from home, how she will manage to refill her morphine prescriptions at a distant public hospital pharmacy, who will help her care for her mother and daughter, and what will happen to them when she dies. Palliative care provision is unheard of in her community, and is not provided at the nearest health centre.

Arlene’s story is not uncommon and highlights the need for increased capacity in the provision of palliative care services throughout the Caribbean, especially in community settings. Palliative care is simply not available for the vast majority of women, and many patients with advanced cancer are currently experiencing unnecessary suffering and dying without access to pain medication.

Many women in low- and middle-income countries (LMICs) present with metastatic breast cancer. There are multiple reasons as to why this is so, ranging from women’s reluctance to present for routine screening, difficulty accessing screening, reluctance to seek medical attention when they have found an abnormality in the breast, difficulties in navigating the system once a diagnosis has been made, preferences for use of complementary and alternative medicines (CAM) over conventional medical treatments, long appointment times to be seen in oncology clinics, and inability to access chemotherapeutic agents and radiation therapy in a timely manner. Delays in having an initial biopsy or primary surgical treatment, followed by considerable delays in obtaining pathology results, can also affect outcomes. Poor communication between medical practitioners and patients, and lack of clear guidelines and protocols for patient referral all serve to compound the problem. For these reasons, women who have presented with a potentially curable illness may end up with locally advanced or metastatic disease (as in Jacinth’s case), which is then further complicated by healthcare system failures.

Despite the urgent need to provide care for these patients, palliative care is still in its infancy in the Caribbean. According to the most recent survey of global palliative care development [5], Caribbean nations all fall under various classifications of no known activity or under-developed palliative care services. Specifically, eight nations in the region are classified as Level 1 ‘no known activity’ (Anguilla, Antigua and Barbuda, Grenada, Montserrat, Saint Kitts and Nevis, Saint Vincent and the Grenadines, Turks and Caicos Islands, US Virgin Islands), three are classified as Level 2 ‘capacity building’ (British Virgin Islands, The Bahamas, Dominica), and eight nations are designated as Level 3a ‘isolated provision’ (Barbados, Belize, Bermuda, Cayman Islands, Guyana, Jamaica, Saint Lucia, Trinidad and Tobago). No countries in the region have preliminary integration of palliative care into their mainstream healthcare system, let alone full or widespread integration. In countries delivering isolated services, models of care delivery differ and depend to some extent on their geography. For more information on dimensions of palliative care available in these countries, see Table 2. In many cases, we have had to survey healthcare professionals in these nations ourselves to gather the data in this table, owing to a dearth of publicly available information.
  1. (3)

    Lack of Provider Training

     
Table 2

Healthcare system capacity among countries with at least ‘isolated provision’ of palliative care (PC)

Country

PC services available* in public sector

PC services available in community/home-based care

Breast cancer stage at diagnosis -number of patients (%)

Healthcare system

Healthcare professionals with at least a diploma level or higher training in PC

Healthcare costs

Breast cancer treatment costs covered?

Number of centres with radiotherapy available+

Opioid analgesics available

Bahamas

Yes

Yes

0–4 (4.3%)

I—10 (10.6%)

IIA—16 (17.0%)

IIB—10 (10.6%)

IIIA—8 (8.5%)

IIIB—7 (7.4%)

IIIC—7 (7.4%)

IV—1 (1.1%)

Unknown—31 (33.0%)

Data from 2009 to 20111

2 public hospitals supported by community and satellite clinics

2 smaller private hospitals

Several healthcare providers that have received training in palliative care including physicians, nurses, social workers and ministers of religion

Free at point of service

No. Financial hardships and costs are still a barrier

1—Radiation Therapy Services Bahamas Ltd

Codeine, Percocet, Tarocet, Morphine, Morphine IR/SR/INJ

Fentanyl patches

Barbados

Yes

Yes

IIB—(21%)

III—(8%)

IV—(6.5%)

Data from 2002 to 20062

3 hospitals supported by 9 polyclinics. 4 district hospitals that provide residential (geriatric and disabilities) care

Yes

Mixed private and public system. Majority of care and drugs are free at point of access and delivery. However, approximately 39% of healthcare spending is out of pocket and 5% is via private insurance3

No. Financial hardships and costs are still a barrier

1—Queen Elizabeth Hospital

Codeine phosphate, Fentanyl patches, Morphine sulphate IR/SR/INJ

Tramadol, Pethidine

Belize

Yes

Yes

III—29%

Data from 20144

8 public hospitals and over 60 public clinics. 3 private hospitals and over 50 private clinics

?

Free basic care in public facilities. Private insurance can be purchased for care at private facilities

No

None

Morphine IR/SR/INJ

Oxycodone

Fentanyl patches

Bermuda

Yes

Yes

In situ—16 (28.6%)

I—26 (46.4%)

II—10 (17.9%)

III—4 (7.1%)

IV—0 (0%)

Data from 20145

2 public hospitals, 1 urgent care clinic, and several health centres. 1 certified oncologist

?

Private insurance

Free mammograms for women who do not have health insurance. Radiotherapy coverage is included in major plans, but patients must still pay

1—Bermuda Cancer and Health Centre

Morphine IR/SR/INJ

Fentanyl patches

Oxycodone

Cayman Islands

Yes

Yes

ND

2 public hospitals, 7 district health clinics and centres

2 private hospitals, both located in Grand Cayman6

2 with formal training in palliative care, 6 total working in a palliative care and hospice capacity at Cayman Hospice Care

Mixed private and public system. Mandatory health insurance through one of nine approved providers

Yes

None

Morphine sulphate IR/SR/INJ

Pethidine

Oxycodone

Fentanyl patches and INJ

Hydromorphone

Guyana

No

Yes

ND

21 public hospitals and 118 public health centres. 6 private hospitals and their associated clinics7

In 2014, roughly 70 nurses completed a 3-month palliative care training at Georgetown Public Hospital Corporation (GPHC). Nurses at GPHC underwent a second PC training in 2016

Mixed private and public system. Public healthcare free for all. Private care available out of pocket or via private insurance

?

1—Cancer Institute of Guyana

Codeine

Pethidine

Jamaica

Yes

Very limited private sector service

Stage I—11%

Stage III—33%

24 public hospitals, 10 private hospitals, 330 health centres

2 physicians with formal training, many with short course training experience

Mixed public and private system. Public care is free at point of access

Yes

4—Kingston Public Hospital & St. Joseph’s Hospital (public), Cornwall Regional Hospital (public), Radiation Oncology Centre of Jamaica (private)

Codeine, Morphine IR/SR/INJ

Fentanyl INJ/patches

Oxycodone

Pethidine

St. Lucia

Yes

Yes

No data

1 private and 2 public hospitals

Not known

Private system. Mostly funded by out-of-pocket spending, although some have private insurance

Yes

07

Morphine sulphate IR/SR/INJ

Trinidad and Tobago

Limited

Limited

Stages I–III—2772 (73.59%)

Stage IV—323 (8.57%)

Unknown—672 (17.84%)

Data from 1995 to 20078

Trinidad has 9 public hospitals and 84 public health centres. Tobago has 1 public general hospital and 18 public health centres. A small number of private hospitals and providers

Yes

Mixed public and private system. Public care is free at point of access

Yes

3—Southern Medical Clinic (private), National Radiotherapy Centre (public), Brian Lara Cancer Treatment Centre (private)

Codeine: linctus and in combination with Acetaminophen, Tramadol, Morphine, sulphate IR/SR/INJ

Pethidine

*Available means imported into the country, but not necessarily utilised

+Data according to the International Atomic Energy Agency’s (IAEA) Directory of Radiotherapy Centres (DIRAC): https://dirac.iaea.org

1Source: Mungrue K, Chase H, Gordon J, et al. Breast Cancer in the Bahamas in 2009–2011. Breast Cancer. 2016;10:45–52

2Source: Nemesure B, Wu SY, Hambleton IR, Leske MC, Hennison AJ. Risk factors for breast cancer in a black population—The Barbados National Cancer Study. Int J Cancer. 2009;124(1):174–179

3Source: Pan American Health Organisation (PAHO)/World Health Organisation (WHO). Health Systems Profile: Barbados. 2008; http://new.paho.org/hq/dmdocuments/2010/Health-System-Profile-Barbados-2008.pdf. Accessed April 27, 2018

4Source: Belize Cancer Society. Cancer Facts. 2014; http://www.belizecancersociety.org.bz/index.php/index.php?option=com_content&view=article&id=28&Itemid=44. Accessed April 18, 2018

5Source: Bermuda National Tumour Registry. Annual Report 2015. 2015; http://bermudahospitals.bm/wp-content/uploads/2016/11/BdaNationalTumourRegistry2015AnnualReport-WEB.pdf. Accessed April 26, 2018

6Source: Office of the Auditor General Cayman Islands. Cayman Islands Health System. 2017; http://cnslibrary.com/wp-content/uploads/OAG-Report-Cayman-Islands-Health-System-January-2017.pdf. Accessed April 12, 2018

7Source: World Health Organisation (WHO). Global atlas of medical devices—2017. Geneva: World Health Organisation; 2017

8Source: Warner WA, Morrison RL, Lee TY, et al. Associations among ancestry, geography and breast cancer incidence, mortality, and survival in Trinidad and Tobago. Cancer Med. 2015;4(11):1742–1753

Opiophobia is a significant problem in these small island states, and opioid consumption in the Caribbean is well below the global mean [16]. It is worth noting, however, that countries that are UK Overseas Territories (e.g. Cayman Islands and Bermuda) have opioid consumptions significantly higher than the independent nations. Table 3 provides further detail about opioid availability and consumption in the Caribbean, with data from the United Kingdom and United States included for comparison. Here, we note a third challenge, the lack of training for palliative care providers in the region, which is closely correlated with an attendant opiophobia and reluctance by providers to prescribe, dispense and administer opioid medicines [17].
Table 3

Opioid availability and consumption in the Caribbean

Country

Availability of oral morphine

Opioid consumption/morphine equivalence in mg/person (2015)

Anguilla

Yes

1.0

Antigua and Barbuda

Yes

4.2 (2003)

Bahamas

Yes

No data

Barbados

Yes

18.7

Belize

Yes

1.4

Bermuda

Yes

28.5 (1995)

British Virgin Islands

Yes

6.9 (2013)

Cayman Islands

Yes

74.9 (2012)

Dominica

Yes

2.7

Dominican Republic

Yes

2.1 (2014)

Grenada

Yes

1.8 (2011)

Guyana

No

0.66

Haiti

Very limited

0.1 (2013)

Jamaica

Yes

4.1

Montserrat

Not known

2.2

St. Kitts and Nevis

Yes

2.2 (2002)

St. Lucia

Yes

3.4 (2010)

Suriname

Yes

0.71 (2009)

Trinidad and Tobago

Yes

3.9

Turks and Caicos Islands

Yes

4.5 (2009)

St. Vincent and the Grenadines

Yes

5.1

United Kingdom

Yes

156.9

United States

Yes

484.8

Shirley, 69, is a retired practical nurse and married with two grown children. Shirley was diagnosed with breast cancer 5 years ago, and has done well having been able to access all appropriate treatment. Recently, however, she has been having increasingly severe pain in her right hip and has become short of breath on exertion. Investigations reveal that she has now developed metastases to the lungs and bone. Her hip pain has become very severe and she is admitted to her local community hospital. She receives pethidine (meperidine) injections three times a day which afford a little relief. After 5 days she is discharged home with a 1-week supply of codeine tablets, which seem to have little effect. She returns to the ER with severe pain and breathlessness and is admitted once again. She has heard that morphine is recommended for cancer pain, and requests it, but the doctors refuse to prescribe it for fear of causing significant respiratory depression and addiction. Shirley dies alone on the ward with uncontrolled pain and dyspnoea.

Training in palliative care and hence education about opioid prescribing outside of the acute care setting is often not included in undergraduate curricula for doctors, nurses, or pharmacists. Medical students at the University of the West Indies are exposed to the concept of palliative care throughout medical school; however, there is only a single day of dedicated clinical exposure during their training (which occurs in the 4th year of the curriculum). Further, palliative care competency is not assessed in the final exit examination. Exposure for students in Barbados and Trinidad and Tobago is similar. The dearth of trained physicians in the region is epitomised perhaps in Jamaica, where there are only two physicians with specialty training in palliative medicine to serve a population of more than 2.8 million.
  1. (4)

    Use of Complementary and Alternative Medicine (CAM)

     

Claudia is a 43-year-old college-educated banker. She is married with two teenage children and has private health insurance. Two years ago, Claudia discovered a lump in her right breast following sporadic breast self-examination. She immediately requested that her family doctor send her for a mammogram and breast ultrasound. She was then advised to have a breast biopsy and lumpectomy, all of which were covered by her insurance. Her cancer was staged as IIB. She was referred to an oncologist, who recommended adjuvant chemotherapy followed by loco-regional radiotherapy. Claudia had read on the internet that she could likely cure her illness without chemotherapy by changing her diet, drinking green juices, and using medicinal cannabis on a daily basis. She declined any conventional adjuvant therapies, despite advice from two different oncologists, and began her alternative regimen. Eighteen months later, Claudia returned to her doctor with weight loss, severe right upper quadrant pain, and shortness of breath. Testing revealed advanced metastatic disease to her liver and lungs. Claudia is distraught about this turn of events, and now wants Western medicine interventions, although her cancer is so advanced that palliative care is now appropriate.

Claudia’s scenario highlights the unregulated and relatively unmonitored use of traditional, complementary and alternative medicines by patients in the Caribbean. Complementary and alternative medicine (CAM) is defined as a means of treatment that is outside the scope of conventional Western medicine. The prevalence of CAM use among oncology patients in the Caribbean is relatively unknown. One study done in Trinidad, however, found that nearly 40% of women with breast cancer used some form of CAM, and that herbs were the most common type of CAM used (93%), followed by spiritual therapy (74%) [18•]. Patients interviewed felt a need to be in control of their treatment, and wanted to try everything that might help them, and many were fearful of the potential adverse effects of conventional treatments for cancer. Another study of patients at the University Hospital of the West Indies in Kingston, Jamaica found that 80% used medicinal plants in their treatment regimens. Worryingly, 74.7% of these patients were receiving simultaneous treatment with prescription medicines, but only 15% had told their oncologists about their medicinal plant use [19].

Opportunities

While all Caribbean nations demonstrate only isolated provision of palliative care, there is a growing awareness of the unmet need for palliative care and efforts at capacity building and service development are in progress. Here, we introduce six countries where some palliative care services already exist or where there is a move towards capacity building.

In the Bahamas, an archipelagic nation of over 700 islands and cays, and a population of 395,000, palliative care services are provided out of the oncology clinic at the main public hospital in the capital city, Nassau. The service is led by a single physician with primary training in radiation oncology. In contrast, Barbados, which is a small, densely populated island in the Eastern Caribbean with a population of 292,300, uses a primary healthcare model to provide palliative care coverage. The dominant model of care delivery is an interdisciplinary home care service delivered by a multi-professional team and funded by an NGO. Palliative care is also offered through a private outpatient clinic led by two general practitioners, which is supported by a faith-based organisation, the East Caribbean Conference of Seventh Day Adventists.

The Cayman Islands is a United Kingdom Overseas Territory in the western Caribbean Sea. The territory has a population of approximately 58,000 people and comprises three islands: Grand Cayman, Little Cayman and Cayman Brac. Cayman is classified as high-income country. The model of palliative care provision in this country is one that could be emulated in other small, financially stable island archipelagos. Palliative care is delivered principally by Cayman HospiceCare, a not-for-profit organisation that provides home-based care for people with cancer and other serious illnesses. Coverage extends to all three islands in the territory and is delivered free of charge.

The Turks and Caicos Islands (TCI) is an archipelagic island nation located southeast of the Bahamas consisting of approximately 40 islands and cays, of which six are well inhabited. The islands have a population of 53,000. Although TCI is classified as a high-income country by the World Bank, there is a poverty rate of 22% across the population [15]. A newly developed National Health Insurance Plan provides extensive, if not universal, health coverage. Although there is no formal palliative care service yet on the island, Level 2 capacity building is taking place. A community-based palliative care service supporting patients and families in their homes on the respective islands would be ideal for TCI.

Jamaica is the largest island in the English Caribbean, located 150 km south of Cuba and 160 km west of Haiti. It is mountainous in geography and at least 50% of the 2.8 million population live in rural areas. Jamaica is classified as an upper middle-income country, but has a high rate of both urban and rural poor. Palliative care services are centred in the capital city of Kingston, and access to care in rural areas is virtually non-existent. The Hope Institute Hospital in Kingston, a dedicated oncology and palliative care unit, provides a visiting palliative care service to three other hospitals and is seen as a beacon of palliative care practice and education on the island. A palliative care service at the University Hospital of the West Indies in Kingston was started in 2015. There is a small hospice in Kingston and a second, larger one on the island’s north coast.

Trinidad and Tobago (T&T) is a two-island nation off the northern coast of South America with a population of 1.37 million and is classified as a high-income country. Palliative care service provision in T&T is relatively widespread, with at least one palliative care service per Regional Health Authority. Unfortunately, the units are small and inadequate to meet local need. They include three in-patient units (two run by NGOs and one joint NGO/Regional Health Authority venture), two community outreach services and two hospital-based out-patient services.

Belize is an independent Commonwealth country on the east coast of Central America. It is bordered by Mexico, Guatemala and the Caribbean Sea. Belize has a population of 375,000. Palliative care in Belize is provided through the Belize Palliative Care and Hospice Association (BPCHA), a non-profit organisation. The BPCHA, started by a single physician 10 years ago, provides home-based care to palliative care patients across the country using a wide network of both clinical and non-clinical volunteers. While volunteer-based care continues across Belize, efforts are ongoing to establish more formal Ministry of Health funding and support for palliative care.

Despite the challenges we have identified that are common throughout the Caribbean, it is far from our wish to paint an overly pessimistic picture. Rather, we believe that recognition of these challenges also highlights seven, high-impact opportunities that can have a transformative effect on breast cancer treatment and palliative care in the Caribbean. The mandate of the World Health Assembly Resolution 67.19 [20••] to strengthen palliative care as a component of comprehensive care throughout the life course and the recent Lancet Commission Report [21••] provide important frameworks to guide the development of palliative care for all, both of which inform the way we frame these opportunities.
  1. (1)

    Coordinated Effort to Develop Palliative Care Guidelines for the Region

     
The Caribbean community will benefit greatly from a coordinated set of palliative care guidelines that take into account both the varying capacities of healthcare systems across the region and promote practices that are sustainable given current resources. Regionally appropriate guidelines must reflect the limited capacity on the ground, as well as an approach to the inclusion of CAM. An evidence-informed, integrative oncology model is called for, and further research in the area of phytomedicines will be critical, given their widespread and accepted use among patients. The newly convened Caribbean Palliative Care Association (CARIPALCA) is leading an effort to promote the development of culturally inclusive guidelines for palliative care delivery throughout the region.
  1. (2)

    Developing a Workforce Trained in Palliative Care

     
The dearth of opportunities for training in palliative care is a critical issue in the Caribbean. There is very limited or often no inclusion of palliative care education in undergraduate curricula in medicine, nursing, or pharmacy schools. In Jamaica, a new initiative to train diverse providers throughout the region in palliative medicine offers some hope for the future. The Jamaica Cancer Care and Research Institute (JACCRI; see footnote), a new non-government organisation, has partnered with the University of the West Indies (UWI) Department of Medicine and the World Health Organisation (WHO) to expand palliative care training and certification. Efforts are underway to recognise palliative medicine as a specialty in Jamaica and throughout the region, and to provide both introductory training and a Master’s-level degree in Palliative Medicine. Such a critical need, however, cannot be met by a single non-profit organisation. Given that the regional geography makes travel between the islands prohibitively expensive, efforts are also underway to support clinicians providing palliative care via telemedicine initiatives.
  1. (3)

    Ensuring Availability and Accessibility of Immediate Release Morphine

     
Opioid consumption across the Caribbean is quite variable. A majority of the countries in the region have immediate release morphine and other strong opioids listed in their formularies, but real access for many patients is challenging or impossible, mostly due to the pervasive opiophobia that exists at all levels of the health system. Prescription of these medicines is often subject to stringent regulatory restriction, and accessibility is often limited by direct cost [9•]. In October 2016, the International Association for Hospice and Palliative Medicine held a 2-day workshop in Barbados on the Availability and Rational Use of Opioids in the Caribbean, and was attended by 13 countries. The ‘cornerstone trilogy’ [9•] of medicine availability, education and policy reform was highlighted, and the opportunity for providers to share common challenges was invaluable. Improving opioid access requires that there be constant dialogue between regulators and prescribers and that healthcare providers feel comfortable and competent with prescribing. Regional collaboration and shared purchasing of opioids through the Pan American Health Organisation’s (PAHO) Strategic Fund [22] could reduce costs and help prevent stock-outs.
  1. (4)

    Developing Models of Community-Based Palliative Care

     

Closely tied to the need to train all levels of healthcare providers in palliative medicine is the need to develop community-based models of care. Cleary and colleagues [23••] developed a consensus statement on the delivery of palliative care in LMICs for women with metastatic breast cancer, and include a description of possible models for delivery of community-based palliative care (CBPC). As we have seen, in countries with weak healthcare systems, incomplete or no universal health coverage, and no community-based palliative care, patients with locally advanced and metastatic disease often spend out-of-pocket (OOP) for inappropriate treatments and basic healthcare. They may frequently experience major disruption to their financial stability and may also express poor understanding of their illness. Often, little or no information on prognosis is given and therefore women are unable to prepare appropriately for themselves or their family. The result is often severe financial hardship, broken families and a sustained distrust in the health system.

In these situations, CBPC can be considered a ‘best buy’. This model of palliative care provision has proven successful in other lower-income countries such as India, specifically the area of Kerala [24]. A CBPC service aims to maximise the care of individuals and their families in their own homes, and has been shown to improve patient and family quality of life, relieve the burden of severe pain and other symptoms, allow patients and caregivers to return to work and school, and avoid unnecessary hospitalisations. This can result in lowered hospital and health system costs [25] and reduced OOP healthcare costs for households, while simultaneously keeping women with advanced incurable disease in their preferred environment—their own home. Trained community caregivers could support chronic and terminally ill patients at home, providing respite for family caregivers. Family caregivers could also earn extra income by sharing their skills throughout the community once they have received basic caregiver training. Models of CBPC already exist on some Caribbean islands and could be emulated by island nations with similar challenges.

  1. (5)

    Educating Patients

     
As illustrated by the scenarios above, there are widespread traditional beliefs about breast cancer and other cancers that run counter to current evidence. Still, such beliefs and lack of education about breast cancer can be powerful. Although there is certainly a paucity of research on patient factors that contribute to successful breast cancer treatment in the Caribbean, a few studies show promising results from patient education initiatives on breast cancer aetiology, risk factors and screening [26, 27]. Many national cancer societies in the region also have outreach programmes that run public education in schools, workplaces, churches, health centres, health fairs and radio programmes. There has been no assessment, however, of how effective and widespread these practices are. In an unpublished study from Barbados, however, Natalie Greaves and Heather Harewood note that patients’ abilities to identify and understand the symptoms and signs of breast cancer are important in expediting health-seeking behaviour and entering appropriate care pathways.
  1. (6)

    Development of IT Infrastructure Needed to Support Patient Care and Research Initiatives

     

The scarcity of health information technology in the region makes it very difficult for providers to track patients across settings, or to efficiently manage patient care. While Jamaica, the Bahamas, and Trinidad and Tobago have plans to implement an electronic health record (EHR) system nationwide, time to implementation is unclear. In Barbados, electronic health records are used in primary care, but not yet in public hospitals.

The same health information technology (HIT) needed to manage patient care is also needed to support research on palliative care services provided in relation to clinical outcomes, in order to support best practices and continuous quality improvement throughout the region.
  1. (7)

    Incorporating Palliative Care into National Health Systems of LMICs

     

Ultimately, palliative care will not be available to those suffering from serious illness throughout the Caribbean unless it is integrated into the healthcare systems of these island nations. This will require educating policy-makers regarding the goals of palliative care and the quality of palliative care that can be realised for relatively little cost. Palliative care, fortunately, is one of those cases where doing the right thing is often the most cost-effective option. Several studies have documented substantial savings from reduced inpatient stays where palliative care has been made widely available [28].

The Lancet Commission Report on Global Access to Palliative Care and Pain Relief published in April 2018 [21••] has galvanised leaders in the global health community to advance access to palliative care that is affordable for those in LMICs. The Commission Report emphasises the relief of human suffering as the primary goal of palliative care over previous definitions that have emphasised improving the quality of life [29]. In doing so, the report proposes an Essential Package of pain relief and palliative care services to address such suffering, including 21 essential medicines such as immediate release and injectable morphine, a short list of basic medical equipment and a minimum coterie of human resources. The core cost of the essential package is estimated at $3USD per capita, and the medicines and basic equipment described in the essential package are generally available in countries in the Caribbean. What is still missing, however, are human resources with appropriate training to deliver such care. What is needed, therefore, is a concerted regional approach to policy development, cancer control and palliative care programme planning, sharing of expertise and success stories, and a deep commitment by governments to relieving the serious health-related suffering caused by cancer and other chronic diseases that are widespread in the region.

Conclusions

In the Caribbean region, there is a vast gap in capacity to meet the palliative care needs of breast cancer patients. In order to close this gap or ‘access abyss’, we need to develop strong regional collaborations, build capacity through education and research, ensure improved access to medicines and enact policies that reflect the real needs of our populations.

At its very heart, the issue of relieving health-related suffering in the Caribbean is a matter of health equity and distributive justice. The human dignity of those suffering without access to pain medicines, and without any source of comfort or support, demands action on the part of all those in regional and global health communities.

Jamaica Cancer Care and Research Institute (JACCRI) Founding Institutions:
  • Hope Institute Hospital—Kingston, Jamaica

  • Surgipath and Cytology Laboratory, Inc.—Kingston, Jamaica

  • The University of the West Indies (Mona)—Kingston, Jamaica

  • Harvard/MGH Center on Genomics, Vulnerable Populations, and Health Disparities, Massachusetts General Hospital—Boston, MA, USA

The Jamaica Cancer Care and Research Institute (JACCRI) is a non-profit organisation dedicated to advancing knowledge about the drivers of cancer in Jamaica and improving access to quality cancer care for all Jamaicans, and for persons throughout the region. Our audience served ranges from physicians, nurses, allied health providers, healthcare policy-makers and cancer patients themselves. Specifically, JACCRI’s primary aims are to:
  1. 1.

    Ensure that Jamaicans are represented in cutting-edge cancer research going on worldwide, and conduct world-class research to understand the aetiology of cancer in Jamaica;

     
  2. 2.

    Identify optimal prevention and treatment strategies for Jamaica, and find creative ways to implement these through public–private partnerships;

     
  1. 3.

    Provide world-class training opportunities and ongoing support for healthcare professionals in Jamaica including physicians, nurses and allied health professionals engaged in cancer care;

     
  2. 4.

    Establish Palliative Medicine as a recognised medical specialty at the University of the West Indies and train a new generation of clinicians in Jamaica and throughout the region to be certified in palliative medicine; and

     
  3. 5.

    Improve the quality of cancer care—from diagnosis to treatment to end-of-life care—for all Jamaicans, especially Jamaica’s most resource-limited patients.]

     

Notes

Compliance with Ethical Standards

Conflict of Interest

N.G. declares involvement with the Barbados Palliative Care Association.

D.S., M.A.A., K.C., S.C., M.M., G.W., H.H. and A.E.S. declare no conflict of interest.

Human and Animal Rights and Informed Consent

This article does not contain any studies with human or animal subjects performed by any of the authors.

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Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2018

Authors and Affiliations

  • Dingle Spence
    • 1
    • 2
    • 3
  • M Austin Argentieri
    • 3
    • 4
    • 5
  • Natalie Greaves
    • 6
  • Karen Cox
    • 7
  • Sheray N. Chin
    • 2
    • 3
  • Margo Munroe
    • 8
  • Gemma Watson
    • 9
  • Heather Harewood
    • 10
  • Alexandra E. Shields
    • 3
    • 4
    • 11
  1. 1.Hope Institute HospitalKingstonJamaica
  2. 2.Faculty of MedicineUniversity of the West IndiesKingstonJamaica
  3. 3.Jamaica Cancer Care and Research InstituteUniversity of the West IndiesKingstonJamaica
  4. 4.Harvard/MGH Centre on Genomics, Vulnerable Populations, and Health Disparities, Department of MedicineMassachusetts General HospitalBostonUSA
  5. 5.School of Anthropology and Museum EthnographyUniversity of OxfordOxfordUK
  6. 6.George Alleyne Chronic Disease Research CentreUniversity of the West IndiesCave HillBarbados
  7. 7.Caura Palliative Care UnitSt AugustineTrinidad and Tobago
  8. 8.Princess Margaret HospitalOncology CentreNassauBahamas
  9. 9.Cheshire Hall Medical CentreProvidencialesTurks and Caicos Islands
  10. 10.Faculty of Medical SciencesUniversity of the West IndiesCave HillBarbados
  11. 11.Harvard Medical SchoolBostonUSA

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