H U M A N R I G H T S W A T C H. ENDING NEEDLESS SUFFERING Improving Palliative Care in Francophone Africa

Transcription

1 H U M A N R I G H T S W A T C H ENDING NEEDLESS SUFFERING Improvig Palliative Care i Fracophoe Africa

2 (frot cover) Patiets receivig trasfusios ad chemotherapy at Datec Hospital s Joliot Curie cacer ward i Seegal Agela Chug/Huma Rights Watch

3 ENDING NEEDLESS SUFFERING Improvig Palliative Care i Fracophoe Africa May 2015

4 AFRICAN PALLIATIVE CARE ASSOCIATION ASSOCIATION SÉNÉGALAISE DE SOINS PALLIATIFS ET D ACCOMPAGNEMENT FÉDÉRATION INTERNATIONALE DE SOINS PALLIATIFS H U M A N R I G H T S W A T C H HUMAN RIGHTS WATCH HRW.org INTERNATIONAL ASSOCIATION FOR HOSPICE & PALLIATIVE CARE INTERNATIONAL CHILDREN S PALLIATIVE CARE NETWORK PAIN & POLICY STUDIES GROUP UNION FOR INTERNATIONAL CANCER CONTROL THE WORLD HOSPICE PALLIATIVE CARE ALLIANCE

5 INTRODUCTION...7 PALLIATIVE CARE IN FRANCOPHONE AFRICA...9 PALLIATIVE CARE DEVELOPMENT IN FRANCOPHONE AFRICA...10 OPIOID CONSUMPTION IN FRANCOPHONE AFRICA...12 BARRIERS TO PALLIATIVE CARE IN FRANCOPHONE AFRICA...14 Removig Barriers to Palliative Care i Fracophoe Africa...15 DEVELOPING PALLIATIVE CARE IN FRANCOPHONE AFRICA...16 Key Recommedatios i the WHA Resolutio...17 MAY 2015

6 A physicia fillig out a pai chart for a cacer patiet Ruth Fremso/The New York Times/Redux 6 ENDING NEEDLESS SUFFERING

7 INTRODUCTION People i coutries aroud the world are livig loger, presetig health systems with a sigificat ew challege: carig for more ad more people with oe ad ofte several advaced chroic illesses, such as cacer, diabetes, demetia, or heart ad lug disease. These illesses are by far the leadig cause of mortality i the world today, accoutig for 63.5 percet of all deaths. 1 They are also ofte accompaied by symptoms such as pai, shortess of breath, ausea, axiety, ad depressio. If ot treated properly, these symptoms ca destroy the quality of life of both patiets ad their families. For example, Huma Rights Watch has foud that people with utreated severe pai ofte describe their pai i exactly same terms as victims of torture that is, as so itese that they would do aythig to make it stop. 2 People with utreated severe pai ofte describe their pai i exactly same terms as victims of torture that is, as so itese that they would do aythig to make it stop. Huma Rights Watch MAY

8 GLOBAL POPULATION OVER AGE 65 IN BILLIONS NON-COMMUNICABLE DISEASES AS A PERCENTAGE OF ALL DEATHS 2060 Source: World Populatio Prospects: Uited Natios Departmet of Ecoomic ad Social Affairs, Populatio Divisio. oje ect roj pro ted cte jec While advaced, progressive chroic illesses may ofte ot be curable, the symptoms they cause ca geerally be well-cotrolled with iexpesive medicies ad itervetios. Palliative care, a emergig field of medicie, focuses o esurig that people with life-limitig illesses ad their loved-oes ca ejoy the best possible quality of life durig their disease, up util their last momets. The World Health Orgaizatio (WHO) estimates that 40 millio people require palliative care at the ed of life each year. Yet the availability of palliative care is limited i much of the world. A recet WHO report estimates that o palliative care services exist i 75 coutries 3 ad that aroud 5.5 millio cacer patiets ad 1 millio ed-stage HIV/AIDS patiets suffer moderate to severe pai each year without treatmet. 4 I 2014, the World Health Assembly, a meetig where health miisters from aroud world discuss pressig global health issues, took the critical step of callig o all coutries to itegrate palliative care ito their health systems to ed to this eedless sufferig. 70% Globa l rate d projectee Approximately 5.5 billio people, or three quarters of the world s populatio, live i coutries with iadequate access to treatmet for moderate to severe pai Iteratioal Narcotics Cotrol Board, March t projected 20 Africa rate Sources: 2000, 2015, ad 2030: Cause-Specific Mortality ad Projectios: World Health Orgaizatio: Health Statistics ad iformatio systems. 1990: Global Burde of Disease Data: Istitute for Health Metrics ad Evaluatio. 8 ENDING NEEDLESS SUFFERING

9 Dr. Oumar Ba, medical ocologist, ad his colleague i a cosultatio room i Dakar, Seegal Dr. Oumar Ba Palliative Care i Fracophoe Africa Palliative care provides cotiuity to curative medicie. Caregivers o loger feel powerless faced with the disease, ad the patiet, with access to relief from pai, recovers his/her digity, hope ad a better quality of life. Dr. Oumar BA, Medical Ocologist, Grad Yoff Hospital, Seegal, Each year, a estimated 912,000 people, icludig 214,000 childre, require palliative care i Fracophoe Africa. 6 The eed for this essetial health service is likely to rise sigificatly i the comig years as the percetage of people over 65, the segmet of the populatio most affected by chroic illesses, is expected to more tha double i Fracophoe Africa by Yet the availability of palliative care services is very limited i the regio. A 2012 study, for example, foud that 16 of 22 Fracophoe Africa coutries do ot have ay healthcare providers that offer palliative care. I cotrast, the same study foud that early all Aglophoe Africa coutries had at least some palliative care services (see table I). 8 The availability of morphie, a strog pai killer that is idispesable for pai maagemet, is very limited i Fracophoe Africa coutries. The Iteratioal Narcotics Cotrol Board, a Uited Natios agecy, classifies each coutry i the regio, apart from Tuisia, as havig very iadequate morphie availability. 9 More tha half the coutries i the regio for which data is available use so little morphie that it is ot eve sufficiet to treat 5 percet of people dyig i pai from cacer ad AIDS each year. MAY

10 Palliative Care Developmet i Fracophoe Africa Table I: Compariso of Palliative Care Developmet i Fracophoe ad Aglophoe Africa 10 Fracophoe Africa 11 WHPCA/WHO Level of Palliative Care Developmet Bei Burkia Faso Burudi Cetral Africa Republic Chad Comoros Djibouti Gabo Guiea Mauritaia Niger Seegal+ Togo Algeria Democratic Republic of the Cogo Madagascar Cameroo Cogo Mali Morocco Tuisia Côte d'ivoire Aglophoe Africa AWHPCA/WHO Level of Palliative Care Developmet Liberia Mauritius Seychelles Botswaa The Gambia Ghaa Lesotho Namibia Nigeria Rwada Sierra Leoe Suda* Swazilad Keya Malawi South Africa Tazaia Zambia Zimbabwe Ugada + Sice 2011, Seegal has developed two palliative care services. * Data was collected i 2011, prior to South Suda s idepedece i September of that year. No kow palliative care provisio or iitiatives to develop it No kow palliative care provisio but evidece of some iitiatives to develop it A small umber of palliative care services operatioal Multiple palliative care services operatioal but ot itegrated ito the healthcare system Palliative care is partially itegrated ito the healthcare system Comprehesive provisio of palliative care throughout the coutry 10 ENDING NEEDLESS SUFFERING

11 MAY

12 Opioid Cosumptio i Fracophoe Africa Table II: Opioid Cosumptio Data for Fracophoe Africa 12 Coutry Estimated Aual Cacer ad AIDS Deaths with Moderate to Severe Pai (2012) Estimated Number of Termial Cacer ad AIDS Patiets who: Are ot Receivig Adequate Pai Treatmet (Miimum Number) Could be treated with all Strog Opioids Cosumed (percetage) Burudi Cetral Africa Republic Comoros Cogo Djibouti Guiea Mauritaia Niger Burkia Faso <1 % Côte d'ivoire <1 % Gabo <1 % Chad % Democratic Republic of the Cogo % Mali % Togo % Cameroo % Madagascar % Seegal % Bei % Morocco % Algeria % Tuisia % Coutry did ot report opioid cosumptio to the INCB durig Cosumptio of less tha or equal to 2 percet of that eeded to treat all cacer ad HIV/AIDS patiets with pai Cosumptio of betwee 2.1 ad 5 percet of that eeded to treat all cacer ad HIV/AIDS patiets with pai Cosumptio of betwee 5.1 ad 25 percet of that eeded to treat all cacer ad HIV/AIDS patiets with pai Cosumptio of betwee 25.1 ad 99% percet of that eeded to treat all cacer ad HIV/AIDS patiets with pai Cosumptio of equal to or greater tha 100 percet of that eeded to treat all cacer ad HIV/AIDS patiets with pai 12 ENDING NEEDLESS SUFFERING

13 MAY

14 Barriers to Palliative Care i Fracophoe Africa Patiets ad their relatives waitig outside Morocco s Natioal Istitute of Ocology i Rabat, Morocco Matt Simo/Huma Rights Watch We are oly at the begiig of our goal, which is to provide people experiecig the most difficult times i their lives, the opportuity to receive appropriate care earby their families. Dr. Mati Nejmi, former chief of aesthesiology at the Natioal Ocology Istitute i Rabat, Morocco, The reasos for the gap betwee the eed for palliative care ad its availability are well documeted. Barriers iclude a lack of health policies to support the developmet of palliative care; lack of adequate traiig for healthcare workers i the disciplie; challeges with the supply of palliative care medicies; ad cotrolled substace regulatios that complicate prescribig ad dispesig opioid aalgesics, such as morphie. 14 Moreover, i may Fracophoe Africa coutries, providig palliative care is a relatively ew challege. Eve today, may people i the regio die relatively sudde deaths due to commuicable diseases or trauma. However, due to advaces i medical care, more ad more people ow succumb to log-term chroic illess or old age. Adaptig healthcare systems to this ew reality is a major challege. Eve so, a umber of coutries, icludig i Fracophoe Africa, have show that substatial progress ca be made 14 ENDING NEEDLESS SUFFERING

15 i developig this essetial health field with low-cost, effective measures. As the WHO has oted, takig steps to address these barriers cost[s] very little but ca have a sigificat effect. 15 Takig steps to address these barriers cost[s] very little but ca have a sigificat effect. World Health Orgaizatio, Cacer Pai Relief: With a Guide to Opioid Availability, Removig Barriers to Palliative Care i Fracophoe Africa Healthcare Policy: May coutries do ot have a strategy for addressig palliative care eeds as they have ot yet itegrated palliative care ito atioal healthcare plas ad policies o cacer or ocommuicable diseases. 16 This is especially problematic i cacer plas because most cacer patiets i low ad middle icome coutries are diagosed at advaced stages i the diseases ad ca oly beefit from palliative care. A positive example: I 2006, the Miistry of Health of Côte d Ivoire released a five-year palliative care strategy. Oe of the few stad-aloe palliative care strategies i Africa, it lays out specific steps for the govermet to take to improve access to this essetial health service. 17 As Table I shows, Cote d Ivoire was the oly Fracophoe Africa coutry i 2011 with multiple operatioal palliative care services. Medical Educatio: I may coutries, healthcare workers do ot receive ay traiig i carig for patiets with advaced illesses. 18 Without adequate kowledge ad practical experiece, they become impotet witesses to the sufferig of their patiets. A positive example: Morocco recetly ameded their udergraduate medical curriculum to iclude palliative care. I 2015, all medical studets will receive 20 hours of madatory istructio o pai ad palliative care. 19 Medicie Availability: Overly strict regulatios o cotrolled substaces impede patiets access to opioid aalgesics i may coutries. 20 I umerous Fracophoe Africa coutries, coloial-era regulatios limit to seve-days the amout of time morphie ca be prescribed, meaig patiets i grave coditios or their relatives must make the ofte difficult trip to their doctor each week to pick up a ew prescriptio. Frace chaged this regulatio i 1999, but it remais i place i may coutries i the regio. 21 Positive examples: Algeria, Morocco, ad Tuisia have icreased their opioid prescriptio period from 7 to 28 days. 22 MAY

16 Developig Palliative Care i Fracophoe Africa It s ubearable to see your child sick ad i pai. Momour Niag, Adama s father. I 2014, the World Health Assembly uaimously adopted resolutio WHA67.19 callig o all UN member states to itegrate palliative care ito atioal health systems. 24 The resolutio states that it is the ethical duty of health care professioals to alleviate pai ad sufferig irrespective of whether the disease or coditio ca be cured. Similarly, the WHO Global Actio Pla for the Prevetio ad Cotrol of No- Commuicable Diseases idetifies palliative care as a itegral part of comprehesive care for these illesses. Adama, a 14-year-old girl with leukemia, at Datec Hospital i Seegal, where she got morphie syrup to relieve her pai. Adama passed away i Jue Agela Chug/Huma Rights Watch The resolutio ad actio pla offer a road map for itegratig palliative care ito atioal healthcare systems, with recommedatios regardig health ad fiacig policies, traiig of healthcare workers, ad access to essetial medicies. The resolutio also calls o the WHO to develop ad update relevat cliical guidelies ad provide member states techical assistace i developig palliative care services. I the ext two years, the WHO will work with member states, a ad-hoc techical expert group, ad civil society orgaizatios to implemet the resolutio. It is preparig a comprehesive implemetatio strategy for 16 ENDING NEEDLESS SUFFERING

17 the resolutio, developig ew cliical ad policy guidace for use by Member States, ad plas to work with several Member States to create pilot projects. These efforts provide Fracophoe Africa coutries ad their healthcare systems with a importat opportuity to address a icreasigly urget healthcare eed ad make sure that their citizes ca live with digity eve while livig with a icurable disease. It is the ethical duty of health care professioals to alleviate pai ad sufferig irrespective of whether the disease or coditio ca be cured. World Health Assembly (WHA) resolutio o palliative care, May Key Recommedatios i the WHA Resolutio: Healthcare Policy: Develop, stregthe ad implemet palliative care policies itegrate evidece-based, cost-effective ad equitable palliative care services i the cotiuum of care, across all levels. Educatio: Aim to iclude palliative care as a itegral compoet of the ogoig educatio ad traiig offered to care providers accordig to the followig priciples:(a) basic traiig ad cotiuig educatio o palliative care should be itegrated as a routie elemet of all udergraduate medical ad ursig professioal educatio ; (b) itermediate traiig should be offered to all health care workers who routiely work with patiets with life-threateig illesses ; ad (c) specialist palliative care traiig should be available to prepare health care professioals who will maage [patiets with complex symptoms]. Medicies Availability: Review ad, where appropriate, revise atioal ad local legislatio ad policies for cotrolled medicies [ad] update, as appropriate, atioal essetial medicies lists i the light of the recet additio of sectios o pai ad palliative care medicies to the WHO Model List of Essetial Medicies. Fudig: Esure adequate domestic fudig ad allocatio of huma resources for palliative care iitiatives... MAY

18 1 Uited Natios Departmet of Ecoomic ad Social Affairs (UNDESA) Populatio Divisio, Chagig Levels ad Treds i Mortality: the Role of Patters of Death by Cause, 2012, p. 7, (accessed March 31, 2015). 2 Huma Rights Watch Report, Please Do t Make Us Suffer Aymore: Access to Pai Treatmet as a Huma Right, pp. 6-7 (New York: Huma Rights Watch, 2009), 3 WHO ad Worldwide Hospice Palliative Care Alliace (WHPCA), Global Atlas of Palliative Care at the Ed of Life, Jauary 2014, p. 36, (accessed April 13, 2015). 4 WHO Briefig Note, Access to Cotrolled Medicatios Programme, April 2012, p. 1, (accessed April 13, 2015). 5 Iteratioal Narcotics Cotrol Board (INCB), Report 2014, March 2015, p. 3, (accessed March 23, 2015). 6 Calculated based o WHO s estimate of palliative care eed i the Easter Mediterraea ad Africa regio. WHO ad WHPCA, Global Atlas of Palliative Care at the Ed of Life, pp See: 8 We are ot aware of ay studies that have specifically ivestigated the reasos for the gap betwee Aglophoe ad Fracophoe coutries although the fact that the Uited Kigdom was the birthplace of palliative care ad that most palliative care fuders, icludig the Diaa Pricess of Whales Memorial Fud, the Ope Society Foudatios ad the US Presidet s Emergecy Fud for AIDS, have fuded such iitiatives i Aglophoe Africa coutries, are likely factors. 9 Iteratioal Narcotics Cotrol Board, Availability of Opioids for Pai Maagemet ( average), 2012, Tuisia s use of opioid aalgesics is classified as simply iadequate. 10 WHO ad WHPCA, Global Atlas of Palliative Care at the Ed of Life, p. 36, (accessed April 20, 2015). T. Lych, et al., Mappig Levels of palliative Care Developmet: A Global Update, Joural of Pai ad Symptom Maagemet, vol. 45, o. 6, Jue 2013, (accessed April 20, 2015). 11 To categorize coutries as Fracophoe or Aglophoe, we looked at the prevalece of spoke Frech or Eglish withi each coutry. I coutries were both laguages are commoly spoke, we cosidered the followig factors i makig our determiatio: laguage officially recogized by the govermet; laguage used i govermet affairs; laguage used i educatioal settigs; ad coloial history. The level of palliative care developmet ad/or morphie cosumptio withi a give coutry was ot a cosideratio i our determiatio. 12 America Cacer Society, Treat The Pai, Coutry Reports, (accessed March 3, 2015). 13 Youssef Sourgo, Creatio of the First Uit for Palliative Care i a Private Cliic i Casablaca, Morocco World News, Jue 5, 2013, (accessed April 13, 2015). 14 WHO, Cacer Cotrol: Kowledge ito Actio: WHO Guide for Effective Programmes: Module 5, 2007, p. 6, (accessed April 13, 2015); WHA resolutio 67.19, Stregtheig of Palliative Care as a Compoet of Comprehesive Care throughout the Life Course, May 14, 2014, (accessed April 13, 2015). 15 WHO, Cacer Pai Relief: With a Guide to Opioid Availability, 1996, p WHO ad WHPCA, Global Atlas of Palliative Care at the Ed of Life, p Miistère De La Sate et de l Hygièe Publique, Pla Stratégique Natioal des Sois Palliatifs , (accessed April 13, 2015). 18 WHO ad WHPCA, Global Atlas of Palliative Care at the Ed of Life, p Huma Rights Watch iterview with Dea Mohamed Adaoui, dea of the Faculty of Medicie ad Pharmacy of Rabat, Rabat, Jauary 21, WHO ad WHPCA, Global Atlas of Palliative Care at the Ed of Life, p ENDING NEEDLESS SUFFERING

19 21 Décret o du 31 mars 1999 relatif aux substaces vééeuses et à l orgaisatio de l évaluatio de la pharmacodépedace, modifiat le code de la saté publique, art. 5, XI, 22 MY. Achouri, et al., Evolutio de la Réglemetatio Pharmaceutique des opioïdes Majeurs e Algérie. (accessed April 10, 2015); Mati Nejmi, M.D. ad Leyla Hessisse, M.D., Morocca Experiece, i Palliative Care to the Cacer Patiet: The Middle East as a Model for Emergig Coutries, ed. Michael Silberma (New York: Nova Publishers, 2014) ; Modifiat et Complétat la Loi du 26 juillet 1969, Portat Réglemetatio Des Substaces Vééeuses, law o of 2009, art. 83, (accessed April 10, 2015). 23 WHO, Cacer Pai Relief: With a Guide to Opioid Availability, p WHA resolutio 67.19, Stregtheig of Palliative Care as a Compoet of Comprehesive Care throughout the Life Course, May 14, 2014, (accessed April 20, 2014). 25 Ibid. MAY

20 AFRICAN PALLIATIVE CARE ASSOCIATION ASSOCIATION SÉNÉGALAISE DE SOINS PALLIATIFS ET D ACCOMPAGNEMENT FÉDÉRATION INTERNATIONALE DE SOINS PALLIATIFS HUMAN RIGHTS WATCH INTERNATIONAL ASSOCIATION FOR HOSPICE & PALLIATIVE CARE INTERNATIONAL CHILDREN S PALLIATIVE CARE NETWORK PAIN & POLICY STUDIES GROUP UNION FOR INTERNATIONAL CANCER CONTROL THE WORLD HOSPICE PALLIATIVE CARE ALLIANCE 20