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At the Intersection of Health, Health Care and Policy doi: 10.1377/hlthaff.2014.0379 , 33, no.9 (2014):1612-1619 Health Affairs Middle-Income Countries Innovation Can Improve And Expand Aspects Of End-Of-Life Care In Low- And Omar Shamieh and Ara Darzi Mark R. Steedman, Thomas Hughes-Hallett, Felicia Marie Knaul, Alexander Knuth, Cite this article as: http://content.healthaffairs.org/content/33/9/1612.full.html available at: The online version of this article, along with updated information and services, is For Reprints, Links & Permissions: http://healthaffairs.org/1340_reprints.php http://content.healthaffairs.org/subscriptions/etoc.dtl E-mail Alerts : http://content.healthaffairs.org/subscriptions/online.shtml To Subscribe: written permission from the Publisher. All rights reserved. mechanical, including photocopying or by information storage or retrieval systems, without prior may be reproduced, displayed, or transmitted in any form or by any means, electronic or Affairs Health Foundation. As provided by United States copyright law (Title 17, U.S. Code), no part of by Project HOPE - The People-to-People Health 2014 Bethesda, MD 20814-6133. Copyright © is published monthly by Project HOPE at 7500 Old Georgetown Road, Suite 600, Health Affairs Not for commercial use or unauthorized distribution at UNIV OF CALIF SAN DIEGO on September 21, 2014 Health Affairs by content.healthaffairs.org Downloaded from at UNIV OF CALIF SAN DIEGO on September 21, 2014 Health Affairs by content.healthaffairs.org Downloaded from

Palliative and End of Life Care in Lower and Middle Income Countries

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Situation in Lower and Middle Income Countries regarding access to palliative care and availability of opioid medicines. How it can be improved. Innovative strategies in Uganda, Nigeria, India, and elsewhere.

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  • At the Intersection of Health, Health Care and Policy

    doi: 10.1377/hlthaff.2014.0379

    , 33, no.9 (2014):1612-1619Health AffairsMiddle-Income Countries

    Innovation Can Improve And Expand Aspects Of End-Of-Life Care In Low- AndOmar Shamieh and Ara Darzi

    Mark R. Steedman, Thomas Hughes-Hallett, Felicia Marie Knaul, Alexander Knuth,Cite this article as:

    http://content.healthaffairs.org/content/33/9/1612.full.html

    available at: The online version of this article, along with updated information and services, is

    For Reprints, Links & Permissions: http://healthaffairs.org/1340_reprints.php

    http://content.healthaffairs.org/subscriptions/etoc.dtlE-mail Alerts : http://content.healthaffairs.org/subscriptions/online.shtmlTo Subscribe:

    written permission from the Publisher. All rights reserved.mechanical, including photocopying or by information storage or retrieval systems, without prior

    may be reproduced, displayed, or transmitted in any form or by any means, electronic orAffairs HealthFoundation. As provided by United States copyright law (Title 17, U.S. Code), no part of

    by Project HOPE - The People-to-People Health2014Bethesda, MD 20814-6133. Copyright is published monthly by Project HOPE at 7500 Old Georgetown Road, Suite 600,Health Affairs

    Not for commercial use or unauthorized distribution

    at UNIV OF CALIF SAN DIEGO on September 21, 2014Health Affairs by content.healthaffairs.orgDownloaded from

    at UNIV OF CALIF SAN DIEGO on September 21, 2014Health Affairs by content.healthaffairs.orgDownloaded from

  • By Mark R. Steedman, Thomas Hughes-Hallett, Felicia Marie Knaul, Alexander Knuth, Omar Shamieh, andAra Darzi

    Innovation Can Improve AndExpand Aspects Of End-Of-LifeCare In Low- And Middle-IncomeCountries

    ABSTRACT Provision for end-of-life care around the world is widelyvariable and often poor, which leads to millions of deaths each yearamong people without access to essential aspects of care. However, somelow- and middle-income countries have improved specific aspects of end-of-life care using innovative strategies and approaches such asinternational partnerships, community-based programs, andphilanthropic initiatives. This article reviews the state of current globalend-of-life care and examines how innovation has improved end-of-lifecare in Nigeria, Uganda, India, Bangladesh, Myanmar, and Jordan.Specifically, we examine how opioids have been made more available forthe treatment of pain, and how training and education programs haveexpanded the provision of care to the dying population. Finally, werecommend actions that policy makers and individuals can take toimprove end-of-life care, regardless of the income level in a country.

    An estimated fifty-five million peo-ple around the world died in 2011.Two-thirds of these deaths werethe result of noncommunicable dis-eases such as cardiovascular dis-

    eases, cancers, diabetes, and chronic lung dis-eases. One-quarter of the deaths were attributedto communicable, maternal, perinatal, andnutrition-related conditions.1 For nearly 40 per-cent of global deaths, high-quality care at theend of lifeparticularly pain and symptommanagementwould have had a dramatic influ-ence on patients and their families before deathand into bereavement. Yet for the vast majorityof these twenty-two million people and theirloved ones, care was inadequate or entirely un-available.2

    According to the UK Department of Health,end-of-life care helps all those with advanced,progressive, incurable illness to live as well aspossible until they die. It enables the supportiveand palliative care needs of both patient and

    family to be identified and met throughout thelast phase of life and into bereavement. It in-cludesmanagement of pain and other symptomsand provision of psychological, social, spiritualand practical support.3

    We define the end of life as the last year of life.However, we recognize the difficultyif not theimpossibilityof identifying the last year of apatients life before death. We also recognizethe overlap between palliative and end-of-lifecare. Thus, we define end-of-life care as the finalphase of palliative care. Together with curativetreatments, palliative care may start when a pa-tient is diagnosed with a life-limiting condition.As curative treatments are exhausted, end-of-lifecare prepares the patient and family for the in-evitability of death.Historically, end-of-life careand, indeed,

    palliative care as a wholehas been ignored orregarded as a niche subspecialty unworthy ofresources or attention. For most people, partic-ularly in low- and middle-income countries, pal-

    doi: 10.1377/hlthaff.2014.0379HEALTH AFFAIRS 33,NO. 9 (2014): 161216192014 Project HOPEThe People-to-People HealthFoundation, Inc.

    Mark R. Steedman([email protected])is policy fellow for the End ofLife Care Forum at the WorldInnovation Summit for Health(WISH), Qatar Foundation, andGlobal Health Programmemanager of the Institute ofGlobal Health Innovation,Imperial College London, inthe United Kingdom.

    Thomas Hughes-Hallett ischair of the End of Life CareForum at WISH, QatarFoundation, and executivechair of the Institute ofGlobal Health Innovation,Imperial College London.

    Felicia Marie Knaul is amember of the End of LifeCare Forum at WISH, QatarFoundation; foundingpresident of Tmatelo aPecho AC; senior economistfor the Mexican HealthFoundation, in Mexico City;director of the Harvard GlobalEquity Initiative, HarvardUniversity; and an associateprofessor at Harvard MedicalSchool, in Boston,Massachusetts.

    Alexander Knuth is medicaldirector at the NationalCenter for Cancer Care andResearch, in Doha, Qatar.

    Omar Shamieh is chair of theDepartment of Palliative Careat King Hussein CancerCenter, in Amman, Jordan.

    Ara Darzi is executive chair ofWISH, Qatar Foundation, anddirector of the Institute ofGlobal Health Innovation,Imperial College London.

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  • liative care has been and often still is entirelyunavailable.4,5 In countries where the need forend-of-life care has been recognized, it has beenheavily linked to care for peoplewith cancers butnot for those with other diseases.3,68 In recentyears this trend has begun to change.However, astudy in 2013 found that in the United Kingdom,75 percent of cancer patients received palliativecare before dying, but only 20percent of patientsdiagnosed with heart, lung, liver, or kidney con-ditions or dementia either requested palliativecare or were identified as being in need of itbefore dying.9 Even when patients receive palli-ative and end-of-life care, unfortunately suchcare is often provided too late to be entirely ef-fective.10

    Despite these challenges, in recent years themedical community has begun to recognize theimportance and necessity of appropriate, high-quality care for all patients at the end of life.3,6,8

    Studies have shown that high-quality palliativeand end-of-life care can both improve patientsand families outcomes and reduce costs of carein high-income countries.11,12 However, numer-ous obstacles must be overcome for high-qualityend-of-life care to reach everyone in need(Exhibit 1).In this article we recognize the importance of

    solutions that emphasize multiple strategiesworking together across different disciplinesto improve the provision of end-of-life care. Wefocus on two key aspects of care: access to essen-tial medicines, particularly opioids for pain;and the role of education and training in gener-ating a workforce that is capable of providinghigh-quality end-of-life care. We give examplesof innovative strategies and approaches thathave resulted in improved end-of-life care inthese respects, particularly in countries whereresources are scarce. First, however, we examine

    the current state of end-of-life care around theworld.

    Global Palliative And End-Of-LifeCareThe extent and quality of end-of-life care arehighly variable around theworld. Recent reportsby theWorldwide Palliative Care Alliance catego-rized overall palliative care development by levelin 234 countries, using data from 20064 and2011.5 Countries were classified as level 1 (notknown activity), level 2 (capacity building), level3a (isolated provision), level 3b (generalizedprovision), level 4a (preliminary integrationinto mainstream service provision), or level 4b(advanced integration into mainstream serviceprovision). A map of countries according tothese classifications as of 2011 can be found inonline Appendix 1.13

    In 2011, 136 of the 234 countries analyzed(58 percent) had at least one palliative care ser-vice available to patients, a 9percent increase (21countries) over 2006. Most of these improve-ments were found in parts of Africa and weremainly a result of the focus on and response tothe HIV/AIDS epidemic. However, only twentycountries (9 percent) had achieved the highestlevel: advanced integration of palliative care ser-vices intomainstreamhealth services provision.5

    Clearly much improvement is required beforepalliative and end-of-life care are available toall dying patients.Another recent study provided an even more

    alarming set of statistics. The Global Opioid Pol-icy Initiative (GOPI)14,15 evaluated the availabilityand accessibility of opioids for the managementof cancer pain in Africa,16 Asia,17,18 Latin Americaand the Caribbean,19 and the Middle East.20

    Moderate-to-severe chronic pain can be a

    Exhibit 1

    Obstacles To The Global Provision Of High-Quality Palliative And End-Of-Life Care

    Domain Obstacle Key element in successful strategies and approaches

    Policy Governments do not prioritize palliative and end-of-lifecare in health care provision

    Governments develop supportive policies for palliative and end-of-lifecare

    Medicines Essential medicines for pain and symptom managementare not available in most countries

    Opioids and other essential medicines are available and accessible

    Data Research on palliative and end-of-life care isunderresourced and underdeveloped

    Research that produces best-practice data on palliative and end-of-life care is funded

    Culture Death is a taboo subject, leading to a lack of advanceplanning, overmedicalization, and high costs

    To overcome the taboo nature of death, palliative and end-of-lifecare are advocated for, and awareness of them is increased

    Education andtraining

    Countries lack enough professionals with knowledge andtraining in palliative and end-of-life care

    Education and training in palliative and end-of-life care are improved,using innovative methods

    SOURCE Authors analysis of information from Hughes-Hallett T, Murray SA, Cleary J, Grant L, Harding R, Jadad A, et al. Dying healed: transforming end-of-life care throughinnovation. Report presented at: World Innovation Summit for Health; 2013 Dec 1011; Doha, Qatar.

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  • debilitating symptom for cancer patients andthose suffering from other conditions, particu-larly at the end of life. Pain is one of the mostfeared symptoms of cancer and is often highlyprevalent. This is particularly true in areaswhereresources are scarce, disease treatment optionsare limited,most patients present with advanceddisease, comorbidity is present, and the choiceand availability of painmedications are limited.21

    Opioids, the strongest form of pain medica-tion available, include drugs such as morphine,fentanyl, and oxycodone. In the context of palli-ative and end-of-life care, and for moderate-to-severe pain in general, oral morphine is consid-ered the gold standard for pain medicationbecause of its effectiveness, low cost, and easeof use.22 However, opioids can lead to depen-dence or addiction if misused. TheWorld HealthOrganization and the International NarcoticsControl Board have therefore issued guidanceon the use of opioids that aims to maintain abalance between good patient care and drugabuse prevention.23,24 Nonetheless, opioid avail-ability andaccessibility areessentialmarkers of acountrys ability to provide end-of-life care.Overall, the GOPI study revealed that more

    than four billion people live in countries whereopioids are unavailable or inaccessible becauseof overregulation.1420 This leaves patients inthese countries who are dying from cancer andother diseases and who are in moderate-to-severe pain with no recourse for pain relief.These statistics, alarming in their own right,

    convey only part of the story about limitations inend-of-life care around the world and how toimprove its delivery. Regulations on opioidsare clearly excessive. However, even the imme-diate removal of restrictions on opioids wouldnot solve the problem of their limited globalaccessibility. Challenges associated with pre-venting the theft or abuse of opioids; ensuringthe availability and accessibility of opioids inremote regions; and, particularly, the adequacyof the workforce required to prescribe and ad-minister opioids and other essential medicineswould remain.For the remainder of this article we focus on

    specific examples of innovative strategies andapproaches that countries have used to improvethe availability and accessibility of opioids and toemploy education and training to develop aworkforce dedicated to end-of-life care.

    Improving Opioid Availability ForThe Treatment Of PainThe restrictive regulation of opioids has madethese essential medicines extremely difficult toaccess in much of the world.23 In 2012 low- and

    middle-income countries accounted for only7 percent of the worlds legal opioid consump-tion for medical uses.22 We examine the strate-gies used by Nigeria, Uganda, and India to im-prove the availability and accessibility of opioidsfor the treatment of pain.Nigeria Nigeria introduced oral morphine in

    2006.25However, accesswas severely limited andconsumption was negligible for the next severalyears, as administrative bottlenecks thwarted ef-forts to use the morphine for pain relief.26 In2010 a batch ofmorphine powder expired beforeit reached hospitals.26 Between 2010 and 2012oralmorphinewas entirely unavailable.27Duringthat time, it is estimated that more than 99 per-cent of the 182,000 people who died each year inNigeria with moderate-to-severe pain had no ac-cess to pain relief.28 Despite this, Nigerias palli-ative care development was classified as level 3ain 2011.5

    To improve access to oralmorphine, theNiger-ian Federal Ministry of Health partnered withTreat the Pain, an international program of theAmerican Cancer Society, and developed an in-novative multistep plan.28 As a first step, inDecember 2012 theministry purchasednineteenkilograms of morphine sulfate powder and re-ceived from Treat the Pain five kilograms ofpreservatives that increase the morphine pow-ders shelf life from four weeks to six months.The partnership also created a text messagebased notification system that included the tele-phonenumbers of health careproviderswhohadbeen trained in pain treatment, which allows thefederal Ministry of Health to alert providerswhen new batches of morphine are available.These partners are now implementing five fur-

    ther steps of their plan to improve opioid avail-ability and accessibility in Nigeria. The steps areestablishing oral morphine production units attertiary hospitals throughout the country; com-pleting the renovation of a federal manufactur-ing lab and beginning to reconstitute morphinepowder into an oral morphine solution thathealth facilities can purchase directly from Cen-tralMedical Storesthe national agency respon-sible for procuring and maintaining stock levels

    The extent and qualityof end-of-life care arehighly variable aroundthe world.

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  • of health commodities; establishing a secondmorphine distribution point at the Central Med-ical Stores location in Abuja; updating the cur-ricula in medical, pharmacy, and nursingschools to include state-of-the-art pain treat-ment; and expanding clinical training on paintreatment for physicians, pharmacists, andnurses who are already practicing.Initial progress is promising, although much

    remains to be done. Twenty-two of the thirty-twotertiary hospitals in Nigeria have procured mor-phine powder from Central Medical Stores fortheir oral morphine production units. National-ly, morphine consumption in 2013 (6.5 kg) wasmore than twenty times that in 2012 (0.3 kg),and the price of oral morphine has been reducedby more than 80 percent (Christopher Igharo,analyst for Treat the Pain, personal communica-tion, April 7, 2014).However, the estimated need for morphine in

    Nigeria is nearly 1,100 kilograms per year. Thismeans that even with recent improvements, opi-oid consumption in Nigeria is still less than0.1 milligrams per capita. Progress must contin-ue at a rapid pace to ease the pain of patients inNigeria who are suffering frompain at the end oflife.29

    Uganda Uganda recognized the importance ofpalliative and end-of-life care earlier than otherAfrican countries did. In 2011 its developmentwas classified as level 4b.5

    In 1993 Anne Merriman founded HospiceAfricaUganda and recommended to theministerof health that affordable oral morphine be avail-able for palliative care.30 Later that year, pow-dered morphine was imported into Ugandathrough the National Drug Policy and AuthorityStatute of 1993. However, only registered medi-cal practitioners, dentists, and veterinary sur-geons were allowed to prescribe morphine.31

    These measures brought morphine into

    Uganda but left much of the countrys popula-tion still unable to use it for pain relief. There is adrastic shortage of physicians and other quali-fied medical personnel in Uganda, with only0.08physiciansper thousandpeople.32Addition-ally, nearly 80 percent of the physicians inUganda are based in urban areas, yet approxi-mately 90 percent of Ugandans live in rural partsof the country.33 Furthermore, most people inneed of pain management are unable to leavetheir homes to travel the vast distances requiredto receive treatment.31 To overcome these prob-lems,Ugandahad todevise an innovativeway formedical personnel to reach rural areas.In 2004 an amendment to the National Drug

    Policy and Authority Statute was passed thatallowed palliative care nurses and clinicalofficersproviders in a category of specializedmedical assistants that is unique to Ugandatoprescribe morphine.31 This dramatically affectedwho could prescribe and receive morphine inUganda. It also allowed patients to remain athome during treatment and until death, whichmost patients prefer.34,35 With these changes,Uganda created a system that reaches more peo-ple who are in need of opioids.However, to reach every patient in need, the

    system needs to be massively expanded. Ugan-dan opioid consumption is still very low. At lessthan 1.0 milligrams per capita, it is significantlylower than that in South Africa (12.0 mg percapita), Mauritius (5.0 mg per capita), and sev-eral other African countries.16 In contrast, opioidconsumption in the United States in 2011 wasnearly 750 milligrams per capita.36

    India Indias palliative care development wascategorized as level 3b in 2011.5 Its average opi-oid consumption between 2010 and 2012 was0.2 milligrams per capitalower than that of anumber of neighboring countries, includingThailand (1.8 mg per capita), Sri Lanka(0.6 mg), and Bangladesh (0.3 mg).18 This isparticularly surprising since Indias poppy fieldsare the largest source of opium in the world.However, 90 percent of the opium produced inIndia is exported.37

    Indias low opioid consumption results fromits 1985 Narcotic Drugs and Psychotropic Sub-stances (NDPS) Act, which allowed the use ofopioids for medical purposes but introducedsevere penalties for misuse. Physicians becamereluctant to prescribe opioids in most of India.As a result, in 2012 an estimated 616,000 peopledying of HIV/AIDS or cancer who were inmoderate-to-severe pain had limited or no accessto opioids for pain management.38

    However, in February 2014, after years of ad-vocacy from theWorldHealthOrganization,Hu-man Rights Watch, and many other organiza-

    The restrictiveregulation of opioidshas made theseessential medicinesextremely difficult toaccess in much of theworld.

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  • tions, the Indian Parliament passed the NDPSAct Amendment Bill, which simplified the legalregulations on opioids. Previously, multiple li-censes were required for agencies to procuremorphine. Under the 2014 amendment, onlyone license is required from the State DrugsController, which should make morphine muchmore available and accessible.Nonetheless, numerous obstacles remain.

    Most notable is the need for training and educa-tion in prescribing morphine, because mostphysicians have rarely prescribed it since the1985 passage of the NDPS Act.

    Improving Training And EducationIn End-Of-Life CareIn low- and middle-income countries, a lack oftraining programs and of specialists with knowl-edge of palliative care principles has led coun-tries to face severe shortages of essential servicesfor theirdyingpopulations.However, innovativeeducation and training programs have been es-tablished that could serve as examples for othercountries.We examine how Uganda, India, Ban-gladesh, Myanmar, and Jordan have confrontedthis issue.Uganda The palliative and end-of-life care ef-

    forts that began after the founding of HospiceAfrica Uganda in 1993 focused on national gov-ernment policy allowing the prescription ofopioids. The efforts also focused on improvingeducation and training to create a workforce ca-pable of caring for Ugandas dying population.Education and training in three specific areasfollowed: medical student education, morphineprescription training, and the creation of a vol-unteer workforce.Education in palliative care to physicians be-

    gan in 1993, when, for the first time, fourth-yearmedical students at Makerere University heardlectures on palliative care.MbararaUniversity ofScience and Technology followed suit in 1998,with teaching focusedondispellingmyths, fears,and misconceptions about addiction associatedwith theuseofmorphine forpainmanagement.31

    Crucially, palliative care teaching at these uni-versities emphasized that addiction is rare whenmorphine is used to treat severe pain.23

    Training in morphine prescription beganwhenHospice AfricaUganda created the ClinicalPalliative Care Course in 2002. This nine-monthcourse trains palliative care nurses and specialclinical officers to prescribe morphine appropri-ately and effectively, making Uganda the firstcountry in Africa to allow health workers otherthan physicians to prescribe morphine. Thecourse includes eight weeks of theory and athirty-two-week specialist experience in pallia-

    tive care that involves a twelve-week residencyat a Hospice Africa Uganda site, a ten-week pal-liative care or HIV placement, and a ten-weeksession at the students current placement.31

    Hospice Africa Uganda developed a volunteerworkforce to reach the most remote areas ofUganda. The Community Volunteer Program,which began in 2004, trains volunteers to pro-vide palliative care for patients with cancer andHIV/AIDS. In this program, members of localcommunities in remote regions of the countryare trained as community volunteer workers,after which they provide practical, emotional,physical, and spiritual support to people in needof palliative or end-of-life care inside the pa-tients home.33 As members of the communityin regions where local dialects are often spokenand hospice teams frequently fail to identify pa-tients in need of palliative or end-of-life care, thevolunteerworkers provide an essential service torural areas of Uganda.These three innovative approaches to improv-

    ing education and training in end-of-life care inUgandahave alreadyhadan impact.However, allthreeneed tobe expanded to reachmorepatientsin need of care. In addition, no health system canrely on medical assistants and volunteers tomake up for a scarcity of trained physicians.Theexpansionof end-of-life care inUgandamustinclude aspects of generalized health care. Thisis because increased access to physicians, partic-ularly in rural areas, can lead to earlier diagno-ses, a broader variety of treatment options, andbetter overall health outcomes.India Despite the challenges historically im-

    posed by limited access to opioids, there are suc-cess stories in India. Kerala, a small southernstate, has developed a community model for pal-liative care that relies on both volunteers andprofessionals to provide care for those in need.In 2005 Kerala provided two-thirds of the pallia-tive care services in all of India, although it hadonly 3 percent of the countrys population.39

    In 2008 Kerala became the first Indian state todevelop a state-sponsored health policy that in-

    The expansion of end-of-life care in Ugandamust include aspectsof generalized healthcare.

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  • cluded and emphasized palliative care as amajorelement of health care. Kerala is also one of thefew Indian states that relaxed narcotics regula-tions for the purpose of palliative and end-of-lifecare and made oral morphine available to pallia-tive care providers prior to the 2014 NDPS ActAmendment Bill. Kerala used a model ruledrafted by the Department of Revenue that wasspecifically designed to allow a state to simplifyits rules regarding the use of morphine for med-ical purposes.40

    Keralas focus on palliative care beganwith theestablishment of the Neighborhood Network inPalliativeCare in2001.41 Thisnetwork ismadeupmostly of volunteers who deliver social, spiritu-al, and supportive care and guidance to patientswho remain, for the most part, in their ownhomes. Volunteers do not provide medical ser-vices. However, they are highly adept at identi-fying members of the community who are inneed of palliative and end-of-life care, allowingthe small number of trained professionals tohave the greatest impact.41

    The network currently uses over 15,000trained community volunteers to help the fiftypalliative care physicians and one hundred pal-liative care nurses in Kerala look aftermore than15,000 patients.2 The success of the programhasled to the establishment of similar models inEthiopia, Bangladesh, the Seychelles, and Swit-zerland.42

    Keralas model has been extremely successful.Nonetheless, the statemust increase the numberof trained professionals it has to treat the vastnumber of people in Kerala who need palliativeand end-of-life care each year. As India relaxesrestrictions on opioids, Kerala must also shareits knowledge and experience to improve pallia-tive and end-of-life care across the country.Bangladesh And Myanmar Palliative care in

    Bangladesh and Myanmar is limited, with bothcountries categorized as level 3a.5 Furthermore,opioid consumption is extremely low: less than0.5 milligrams per capita in Bangladesh and lessthan 0.1 milligrams per capita in Myanmar.17

    The two countries have very few resources todedicate to building palliative and end-of-life

    care provision. Instead, the countries have usedphilanthropic efforts from regional neighbors tobuild capacity within their mainstream healthsystems. The Lien Collaborative for PalliativeCare launched programs in 2013 in BangladeshandMyanmar that focus on three components: atrain the trainers component that consists ofinterdisciplinary teams of volunteer expert fac-ulty members from palliative care units in theAsia Pacific region; a leadership training compo-nent, in which candidates are selected to spendthree months at established palliative care unitsfor further training; and an opioid availabilityadvocacy initiative component.43

    The goal of these programs is to build a dedi-cated palliative and end-of-life care workforce,including leaders, whose members can establishpalliative and end-of-life care services at key in-stitutions in their home countries and build ca-pacity through developing their own trainingunits in turn. To succeed, the leaders will needsupport and resources from their home insti-tutions.Jordan Jordans palliative care development

    was categorized as level 3b in 2011higher thanthat of most of its neighbors in the Middle Eastbut lagging behind world leaders.5 As in manyother countries, palliative and end-of-life care inJordan is provided mainly to cancer patients.The King Hussein Cancer Center (KHCC)

    opened in 1997 and has become the countrysleading comprehensive cancer center, treatingapproximately 60 percent of the cancer casesin Jordan each year. The KHCC also has the larg-est palliative careprogram in the country andhasimplemented a number of innovative strategiesto provide high-quality palliative and end-of-lifecare to its patients in need.44

    At the KHCC, a palliative care consultant isavailable at all times and offers in-hospital, out-patient, and home care services. All care is deliv-ered through an interdisciplinary team that in-cludes doctors, nurses, social workers, clinicalpharmacists, spiritual advisers, and psycholo-gists. Additionally, the palliative care depart-ment conducts basic and advanced training forall clinical professionals to improve the integra-tion of palliative care across all services and toallow all professional staff to identify, manage,and properly refer patients to the palliative caredepartment based on their needs. Clinical train-ing services are also available to rotating resi-dents from local universities.These programs havemade theKHCC the lead-

    er of palliative care in Jordan. The center iswork-ing to expand its impact by doubling its capacityin 2015 and making palliative and end-of-lifecare available to all dying patients, whether ornot they have a cancer diagnosis.

    Numerous countries,even those with fewresources, have madenotable advances.

    9%At highest levelOnly 9 percent of theworlds countries wereranked as having thehighest level ofintegration of palliativecare into mainstreamhealth services.

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  • DiscussionThe variation in the provision of end-of-life carearound the world is staggering: Nearly one-thirdof all countrieshavenoprovision for palliative orend-of-life care, and only 9 percent of theworldscountrieswere rankedashaving thehighest levelof integration of palliative care into mainstreamhealth services.5 Millions of people die each yearin the torture of pain that could be managed ifrelatively inexpensive and essential medicineswere available and accessible to them. However,even if opioids and other essential medicineswere more widely available worldwide, mostcountries would still lack an adequate workforcewith the knowledge and ability to prescribe andadminister those medicines. These and manyother challenges have hindered the improve-ment of palliative and end-of-life care around theworld. Nonetheless, numerous countries, eventhose with few resources, have made notableadvances.We have described innovative strategies and

    approaches that have been used in Nigeria,Uganda, India, Bangladesh, Myanmar, and Jor-dan to highlight how obstacles to providing end-

    of-life care can be overcome. Several other coun-tries are implementing innovative legislative re-forms andpolicies to increase access to palliativeand end-of-life care. In the Latin America regionthese include Mexico, Panama, Costa Rica, andColombia. The exchange of evidence, informa-tion, and knowledge across countries will be animportant input to effective global action.We believe that crucial to the success of these

    strategies and the overall improvement of globalend-of-life care are the five key elements pre-sented in Exhibit 1: supportive government poli-cy; the availability and accessibility of opioidsandother essentialmedicines for pain and symp-tom management; research that produces best-practice data on palliative and end-of-life care;advocacy and awareness building to overcomethe taboo nature of death in various cultures;and high-quality education and training in palli-ative and end-of-life care.With these elements inplace, countries can provide high-quality carefor their dying people, which is a goal that allsocietiesregardless of income levelcan andshould aspire to achieve.

    The authors acknowledge QatarFoundation for funding the research inthis paper. Some of the material in thisarticle was previously presented at theWorld Innovation Summit for Health, an

    initiative of Qatar Foundation, in Doha,Qatar, December 11, 2013. The authorsthank Meg OBrien and ChristopherIgharo of Treat the Pain for their updateon the progress of their work in Nigeria.

    The authors also thank Will Warburton,Richard Smith, Jeremy Laurance, HananAl Kuwari, and Maryah Al-Dafa for theircomments and advice.

    NOTES

    1 World Health Organization. GlobalHealth Observatory data repository:number of deaths: world, by cause[Internet]. Geneva: World HealthOrganization; 2013 [cited 2014Jul 17]. Available from: http://apps.who.int/gho/data/node.main.CODWORLD?lang=en

    2 Worldwide Palliative Care Alliance,World Health Organization. Globalatlas of palliative care at the end oflife [Internet]. London: The Alliance;c2014 [cited 2014 Jul 9]. Availablefrom: http://www.thewpca.org/resources/global-atlas-of-palliative-care/

    3 Department of Health. End of lifecare strategy: promoting high qual-ity care for all adults at the end of life[Internet]. London: Department ofHealth; 2008 Jul [cited 2014 Jul 9].Available from: http://www.gov.uk/government/uploads/system/uploads/attachment_data/file/136431/End_of_life_strategy.pdf

    4 Wright M,Wood J, Lynch T, Clark D.Mapping levels of palliative caredevelopment: a global view. J PainSymptom Manage. 2008;35(5):46985.

    5 Lynch T, Connor S, Clark D. Map-ping levels of palliative care devel-

    opment: a global update. J PainSymptom Manage. 2013;45(6):1094106.

    6 Wasson K. Ethical arguments forproviding palliative care to non-cancer patients. Int J Palliat Nurs.2000;6(2):6670.

    7 Luddington L, Cox S, Higginson I,Livesley B. The need for palliativecare for patients with non-cancerdiseases: a review of the evidence. IntJ Palliat Nurs. 2001;7(5):2216.

    8 Scottish Government. Living anddying well: a national action plan forpalliative and end of life care inScotland [Internet]. Edinburgh:Scottish Government; 2008 [cited2014 Jul 9]. Available from: http://www.scotland.gov.uk/Resource/Doc/239823/0066155.pdf

    9 Zheng L, Finucane AM, Oxenham D,McLoughlin P, McCutcheon H,Murray SA. How good is primarycare at identifying patients who needpalliative care? A mixed methodsstudy. Eur J Palliat Care. 2013;20(5):21622.

    10 Schofield P, Carey M, Love A, NehillC, Wein S. Would you like to talkabout your future treatment op-tions? Discussing the transitionfrom curative cancer treatment to

    palliative care. Palliat Med. 2006;20(4):397406.

    11 Detering KM, Hancock AD, ReadeMC, Silvester W. The impact of ad-vance care planning on end of lifecare in elderly patients: randomisedcontrolled trial. BMJ. 2010;340:c1345.

    12 Morrison RS, Penrod JD, Cassel JB,Caust-Ellenbogen M, Litke A,Spragens L, et al. Cost savings as-sociated with US hospital palliativecare consultation programs. ArchIntern Med. 2008;168(16):178390.

    13 To access the Appendix, click on theAppendix link in the box to the rightof the article online.

    14 Cherny NI, Cleary J, Scholten W,Radbruch L, Torode J. The GlobalOpioid Policy Initiative (GOPI)project to evaluate the availabilityand accessibility of opioids for themanagement of cancer pain inAfrica, Asia, Latin America and theCaribbean, and the Middle East: in-troduction and methodology. AnnOncol. 2013;24(Suppl 11):xi713.

    15 Cleary J, Radbruch L, Torode J,Cherny NI. Next steps in access andavailability of opioids for the treat-ment of cancer pain: reaching thetipping point? Ann Oncol. 2013;

    Improving Care & Health

    1618 Health Affairs September 2014 33:9

    at UNIV OF CALIF SAN DIEGO on September 21, 2014Health Affairs by content.healthaffairs.orgDownloaded from

  • 24(Suppl 11):xi604.16 Cleary J, Powell RA, Munene G,

    Mwangi-Powell FN, Luyirika E,Kiyange F, et al. Formulary avail-ability and regulatory barriers toaccessibility of opioids for cancerpain in Africa: a report from theGlobal Opioid Policy Initiative(GOPI). Ann Oncol. 2013;24(Suppl 11):xi1423.

    17 Cleary J, Radbruch L, Torode J,Cherny NI. Formulary availabilityand regulatory barriers to accessi-bility of opioids for cancer pain inAsia: a report from the Global OpioidPolicy Initiative (GOPI). Ann Oncol.2013;24(Suppl 11):xi2432.

    18 Cleary J, Simha N, Panieri A,Scholten W, Radbruch L, Torode J,et al. Formulary availability andregulatory barriers to accessibility ofopioids for cancer pain in India: areport from the Global Opioid PolicyInitiative (GOPI). Ann Oncol. 2013;24(Suppl 11):xi3340.

    19 Cleary J, De Lima L, Eisenchlas J,Radbruch L, Torode J, Cherny NI.Formulary availability and regulato-ry barriers to accessibility of opioidsfor cancer pain in Latin America andthe Caribbean: a report from theGlobal Opioid Policy Initiative(GOPI). Ann Oncol. 2013;24(Suppl 11):xi4150.

    20 Cleary J, Silbermann M, Scholten W,Radbruch L, Torode J, Cherny NI.Formulary availability and regulato-ry barriers to accessibility of opioidsfor cancer pain in the Middle East: areport from the Global Opioid PolicyInitiative (GOPI). Ann Oncol. 2013;24(Suppl 11):xi519.

    21 Namukwaya E, Leng M, Downing J,Katabira E. Cancer pain manage-ment in resource-limited settings: apractice review. Pain Res Treat.2011;2011:393404.

    22 Treat the Pain. Access to essentialpain medicines brief (2012 data)[Internet]. Atlanta (GA): Treat thePain; 2014 May 13 [cited 2014Jul 10]. Available from: http://www.treatthepain.org/Assets/Fact%20sheet%20May%202014.pdf

    23 World Health Organization. Narcoticand psychotropic drugs: achievingbalance in national opioids controlpolicy: guidelines for assessment[Internet]. Geneva: WHO; c2000[cited 2014 Jul 10]. Available from:http://whqlibdoc.who.int/hq/2000/who_edm_qsm_2000.4.pdf

    24 International Narcotics ControlBoard. Contribution of the Interna-tional Narcotics Control Board to thehigh-level review of the implemen-tation by member states of the Po-litical Declaration and Plan of Action

    on International Cooperation to-wards an Integrated and BalancedStrategy to Counter the World DrugProblem [Internet]. Vienna: INCB;[cited 2014 Jul 10]. Available from:http://www.incb.org/documents/Publications/ePublication/E-Publication_E_FINAL.pdf

    25 Eyelade OR, Ajayi IO, Elumelu TN,Soyannwo OA, Akinyemi OA. Oralmorphine effectiveness in Nigerianpatients with advanced cancer. JPain Palliat Care Pharmacother.2012;26(1):249.

    26 Odelola T. How Nigeria is tacklingopioid bottlenecks. ehospice [serialon the Internet]. 2012 Dec 12 [cited2014 Jul 10]. Available from: http://www.ehospice.com/africa/ArticleView/tabid/10701/ArticleId/2223/language/en-GB/Default.aspx

    27 Elumelu TN, Abdus-Salam AA,Adenipekun AA, Soyanwo OA. Pat-tern of morphine prescription bydoctors in a Nigeria tertiary hospital.Niger J Clin Pract. 2012;15(1):279.

    28 Treat the Pain. Nigeria: partnershipwith the Federal Ministry of Healthto improve access to morphine forpain treatment [Internet]. Atlanta(GA): Treat the Pain; [cited 2014Jul 10]; Available from: http://treatthepain.org/nigeria.html

    29 Treat the Pain. Nigeria [Internet].Atlanta (GA): Treat the Pain; 2014Jun 2 [cited 2014 Jul 15]. Availablefrom: http://www.treatthepain.org/Assets/CountryReports/Nigeria.pdf

    30 Merriman A, Harding R. Pain con-trol in the African context: theUgandan introduction of affordablemorphine to relieve suffering at theend of life. Philos Ethics HumanitMed. 2010;5:10.

    31 Jagwe J, Merriman A. Uganda: de-livering analgesia in rural Africa:opioid availability and nurse pre-scribing. J Pain Symptom Manage.2007;33(5):54751.

    32 World Health Organization. GlobalHealth Observatory data repository:aggregated data: density per 1000:data by country [Internet]. Geneva:WHO; 2011 [cited 2014 Jul 10].Available from: http://apps.who.int/gho/data/node.main.A1444

    33 Jack BA, Kirton J, Birakurataki J,Merriman A. A bridge to the hos-pice: the impact of a CommunityVolunteer Programme in Uganda.Palliat Med. 2011;25(7):70615.

    34 Sepulveda C, Habiyambere V,Amandua J, Borok M, Kikule E,Mudanga B, et al. Quality care at theend of life in Africa. BMJ. 2003;327(7408):20913.

    35 Ramsay S. Leading the way in Afri-can home-based palliative care. Free

    oral morphine has allowed expan-sion of model home-based palliativecare in Uganda. Lancet. 2003;362(9398):18123.

    36 University of WisconsinMadison,Pain and Policy Studies Group.United States of America [Internet].Madison (WI): The Group; [cited2014 Jul 10]. Available from: http://www.painpolicy.wisc.edu/country/profile/united-states-america

    37 Maya C. Passing of NDPS ActAmendment Bill will makemorphinemore accessible. Hindu [serial on theInternet]. 2014 Feb 23 [cited 2014Jul 10]. Available from: http://www.thehindu.com/todays-paper/tp-national/passing-of-ndps-act-amendment-bill-will-make-morphine-more-accessible/article5718188.ece

    38 Treat the Pain. India [Internet]. At-lanta (GA): Treat the Pain; 2014Jun 2 [cited 2014 Jul 10]. Availablefrom: http://www.treatthepain.org/Assets/CountryReports/India.pdf

    39 Paleri A, Numpeli M. The evolutionof palliative care programmes inNorth Kerala. Ind J Palliat Care.2005;11(1):158.

    40 Human Rights Watch. Unbearablepain: Indias obligation to ensurepalliative care [Internet]. New York(NY): Human Rights Watch; 2009[cited 2014 Jul 10]. Available from:http://www.hrw.org/sites/default/files/reports/health1009web.pdf

    41 McDermott E, Selman L, Wright M,Clark D. Hospice and palliative caredevelopment in India: a multi-method review of services and ex-periences. J Pain Symptom Manage.2008;35(6):58393.

    42 Economist Intelligence Unit. Thequality of death: ranking end-of-lifecare across the world [Internet].London: EIU; 2010 [cited 2014Jul 10]. (Report commissioned byLien Foundation). Available from:http://graphics.eiu.com/upload/QOD_main_final_edition_Jul12_toprint.pdf

    43 Asia Pacific Hospice Palliative CareNetwork. Lien Collaborative for Pal-liative Care: a project to enhancepalliative care leadership and ca-pacity in developing countries [In-ternet]. Singapore: APHN; [updated2013 Dec 11; cited 2014 Jul 10].Available from: http://aphn.org/lien-collaborative-for-palliative-care/

    44 Shamieh O, Hui D. A comprehensivepalliative care program at a tertiarycancer center in Jordan. Am J HospPalliat Care. 2013 Nov 20. [Epubahead of print].

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