health policy, health services, and cancer pain management in the new south africa

11
© U.S. Cancer Pain Relief Committee, 1998 0885-3924/99/$–see front matter Published by Elsevier, New York, New York PII S0885-3924(98)00120-1 16 Journal of Pain and Symptom Management Vol. 17 No. 1 January 1999 Original Article Health Policy, Health Services, and Cancer Pain Management in the New South Africa Susan L. Beck, PhD, RN, AOCN University of Pretoria, Pretoria, South Africa, and University of Utah College of Nursing, Salt Lake City, Utah, USA. Abstract In 1982, the World Health Organization (WHO) identified inadequate relief from cancer pain as an international health problem. WHO recommended that governments develop and implement national policies and programs for cancer pain relief. This report evaluates national health policy and the systems of health care delivery in relation to cancer pain management in the new South Africa. This field study included multiple methods of data collection: analysis of documents, field trips with participant observation in sites of care delivery, focused interviews, and in-depth interviews of key informants. The purposive sample of key informants (n 5 33) represented multiple stakeholders in a variety of settings. Strengths of the developing health policy include specific recommendations related to palliative care; the shift to universal primary care; policies to support drug availability; the inclusion of morphine and codeine as essential drugs at the primary health care level; and the development of a national standard related to cancer pain management. Health services are characterized by two parallel systems of care (private and public) with numerous vestiges of the inequities of apartheid. The management of pain varies by provider and setting; major problems with access exist in the rural areas. Health services in South Africa have been plagued by inequity and inadequate resources. New health policies have set a path to ensure universal access to health care including palliative care for cancer. Their successful implementation is the next necessary step toward improving health services and alleviating the suffering of increasing numbers of individuals with cancer. J Pain Symptom Manage 1999;17:16–26. © U.S. Cancer Pain Relief Committee, 1998 Key Words Cancer pain, health policy, South Africa, international, health services, medical oncology, neoplasm ment. 1 In 1982, the World Health Organiza- tion (WHO) identified inadequate relief from cancer pain as an international health problem and launched a campaign to implement a rela- tively simple and inexpensive method for can- cer pain relief. 2–4 This method, known as the Three Step Analgesic Ladder, has now been shown to be effective in relieving pain in at least 75% of patients. 5–11 In every country of the world, numerous barriers exist to achieving the goal of cancer pain relief. It is therefore not surpris- Presented in part to the American Cancer Society’s 4th National Conference on Cancer Nursing Re- search, January 1997, Panama City, Florida. Address reprint requests to: Susan Beck, Ph.D., University of Utah College of Nursing, 10 S. 2000 East Front St., Salt Lake City, UT 84112-5880 USA. Accepted for publication: June 1, 1998. Introduction As many as 70% of cancer patients suffer from pain caused by their disease or its treat-

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Page 1: Health Policy, Health Services, and Cancer Pain Management in the New South Africa

© U.S. Cancer Pain Relief Committee, 1998 0885-3924/99/$–see front matterPublished by Elsevier, New York, New York PII S0885-3924(98)00120-1

16 Journal of Pain and Symptom Management Vol. 17 No. 1 January 1999

Original Article

Health Policy, Health Services, and Cancer Pain Management in the New South Africa

Susan L. Beck, PhD, RN, AOCN

University of Pretoria, Pretoria, South Africa, and University of Utah College of Nursing,Salt Lake City, Utah, USA.

Abstract

In 1982, the World Health Organization (WHO) identified inadequate relief from cancer pain as an international health problem. WHO recommended that governments develop and implement national policies and programs for cancer pain relief. This report evaluates national health policy and the systems of health care delivery in relation to cancer pain management in the new South Africa. This field study included multiple methods of data collection: analysis of documents, field trips with participant observation in sites of care delivery, focused interviews, and in-depth interviews of key informants. The purposive sample of key informants (n

5

33) represented multiple stakeholders in a variety of settings. Strengths of the developing health policy include specific recommendations related to palliative care; the shift to universal primary care; policies to support drug availability; the inclusion of morphine and codeine as essential drugs at the primary health care level; and the development of a national standard related to cancer pain management. Health services are characterized by two parallel systems of care (private and public) with numerous vestiges of the inequities of apartheid. The management of pain varies by provider and setting; major problems with access exist in the rural areas. Health services in South Africa have been plagued by inequity and inadequate resources. New health policies have set a path to ensure universal access to health care including palliative care for cancer. Their successful implementation is the next necessary step toward improving health services and alleviating the suffering of increasing numbers of individuals with cancer.

J Pain Symptom Manage 1999;17:16–26.

© U.S. Cancer Pain Relief Committee, 1998

Key Words

Cancer pain, health policy, South Africa, international, health services, medical oncology,

neoplasm

ment.

1

In 1982, the World Health Organiza-tion (WHO) identified inadequate relief fromcancer pain as an international health problemand launched a campaign to implement a rela-tively simple and inexpensive method for can-cer pain relief.

2–4

This method, known as the

Three Step Analgesic Ladder

, has now been shownto be effective in relieving pain in at least 75%of patients.

5–11

In every country of the world,numerous barriers exist to achieving the goalof cancer pain relief. It is therefore not surpris-

Presented in part to the American Cancer Society’s4th National Conference on Cancer Nursing Re-search, January 1997, Panama City, Florida.

Address reprint requests to:

Susan Beck, Ph.D., Universityof Utah College of Nursing, 10 S. 2000 East Front St.,Salt Lake City, UT 84112-5880 USA.

Accepted for publication: June 1, 1998.

Introduction

As many as 70% of cancer patients sufferfrom pain caused by their disease or its treat-

Page 2: Health Policy, Health Services, and Cancer Pain Management in the New South Africa

Vol. 17 No. 1 January 1999 Policy and Cancer Pain in South Africa 17

ing that WHO has prioritized fostering re-search in all aspects of cancer pain relief andpalliative care.

In 1990, WHO proposed that countries es-tablish a threefold strategy for achieving can-cer pain relief.

3

The three components of themodel (government policy, education, and drugavailability) address the major internationalbarriers to effective pain relief. Specifically,WHO recommended that governments developand implement national policies and programsfor cancer pain relief and palliative care thatare incorporated into existing health systems.Such programs should include equitable sup-port for programs of palliative care in thehome with appropriate hospital back-up. In areview of the status of WHO’s global cancercontrol program, Stjernsward and Teoh re-ported that at least 13 countries have estab-lished policies on pain, cancer pain, and termi-nal care.

2

Additionally, pain relief or palliativecare was included in most of the 25 countrieswith established cancer control programs.

12

Many countries have now reported on their ef-forts to utilize the WHO strategies to addressthis public health problem.

13–20

In reviewingreports from these countries, it is noteworthythat only two reports, Egypt and Uganda,

16,17

reflect upon the status of cancer pain manage-ment on the African continent, including themore economically developed country of SouthAfrica.

The WHO model provided a framework fora comprehensive ethnographic research projectconducted with the support of a FulbrightScholarship. The purpose of the study was tothoroughly describe the status of cancer painmanagement in South Africa, including healthpolicy, health services, opioid availability anduse, and factors influencing cancer pain man-agement. The specific objectives of this reportare to evaluate 1) the strengths and weaknessesof national health policy and 2) the systems ofhealth care delivery in relation to cancer painmanagement.

South Africa is a large and diverse nationwith a multicultural population. Through de-cades of colonialism and apartheid, two con-trasting societies developed: one highly devel-oped, educated, and relatively well-off; the otherunderdeveloped, illiterate, and poor. Thesecontrasts influence the health of the nation.Health problems represent the whole spectrum

of diseases, ranging from those of a developingcountry, such as infantile diarrhea, to those ofan industrialized society, such as cardiovascu-lar disease and cancer.

21

This phenomenon iswell-illustrated by data regarding cancer inci-dence. The South African Tumor Registry indi-cates that there were 111,207 new cases of can-cer diagnosed in 1990–1991, an average of 152new cases per day.

22

Cancer is the third mostcommon killer of black adults and the secondmost common cause of death in whites, col-oreds (Note: In South Africa, “colored” refersto a racial group of mixed origin), and Asians.As in other African countries, the chief cancersamong blacks are those of the esophagus andcervix. Yet among whites, the primary cancersare similar to the U.S.; cancers of the skin,lung, breast, and prostate predominate. Re-cent reports indicate a shifting pattern amongSouth African blacks with an increase in thecancers of “the Westernized lifestyle” amongthe urbanized black population.

23

In April of 1994, South Africa held its firstdemocratic elections. A new government, theGovernment of National Unity, took office andestablished a Constitutional Assembly. Thenew constitution was approved by Parliamentin May of 1996. The rich cultural diversity anddynamic environment of the new governmentmake South Africa a fascinating place to learnmore about the factors that influence the man-agement of pain.

Methods

This field study received approval by the in-stitutional review boards at the University ofUtah and the University of Pretoria. The inves-tigator analyzed source documents includinglegislation,

24

government policy documents orguidelines, program descriptions and reports,and newspaper and journal articles. Focusedinterviews and field trips seeking backgroundinformation or specific facts were held byphone or in person with representatives of gov-ernment, statutory bodies (e.g., Nursing Coun-cil), nongovernmental organizations, profes-sional associations, educational institutions,and sites of health care delivery. Field notesand published materials from these organiza-tions served as source material.

In-depth interviews were conducted with apurposive sample of key informants (

n

5

33)

Page 3: Health Policy, Health Services, and Cancer Pain Management in the New South Africa

18 Beck Vol. 17 No. 1 January 1999

representing government (

n

5

2), nongovern-mental organizations (

n

5

7), academicians(

n

5

5), pharmaceutical representatives (

n

5

3), and providers (

n

5

22) in a variety of set-tings including private and public; rural andurban; and inpatient, outpatient, and commu-nity. The demographic characteristics of thesample are summarized in Table 1. The sampledoes not represent the majority black racialcomposition of South Africa because many ofthe key stakeholders, including physicians, pro-fessors, and governmental administrators arewhite. This disparity results from the educa-tional and hiring inequalities that existedthroughout apartheid and the transitionalstate of the new government.

Each informant was interviewed in their ownwork setting; written informed consent was ob-tained. The interviews were audio-recordedand transcribed. The investigator analyzedeach transcript through a process of contentanalysis; phrases or sentences representing aparticular idea or notion were coded using aprospective open coding approach. Field noteswere reviewed to supplement the interviewdata. Ideas common to more than three infor-mants are usually indicated without referenceto a number or type of respondent. Direct quo-tations are used to exemplify the common mes-sage. Conflicting ideas or those held by lessthan three informants are labeled as such. In-formants were asked to review a summary ofthe analysis to establish validity. Twenty-sevenof the informants were available for comment;20 responded during the allotted time frame.

All confirmed the “truth value” of the reportwith a few exceptions. Most made minor ortechnical corrections. One person felt thatsome of the political statements, specificallywith regard to apartheid, were one-sided.

Results

The informants agreed that cancer pain “iscommon, it is a problem, and it’s not well-managed.” Many patients first present for can-cer care with advanced cancers and little likeli-hood for cure. As one informant explained “ . . .unless our primary health care system really getsgoing, and our cancer awareness campaign getsgoing, we are going to see an increasing num-ber of what we are already seeing—those whoare not going to be suitable for chemotherapy,they are going to be too late for surgery, . . .and inaccessible to radiotherapy machines, sowe are going to have pain to control.”

The period during which this research wasconducted was a time of transition: a period ofplanning, change, uncertainty, and testing.The Government of National Unity, and mostof its substructures, were either new or interimformations. These structures were often amal-gamations or integrations of the old parallelways of running the country. This historicalcontext is extremely important in analyzinghealth policy related to the management ofcancer pain. It is a policy and a delivery systemin transformation. Some elements such as theregulation of medicines and licensing of pro-fessionals are guided by laws of the past. Someelements such as the Essential Drug List cameinto being during the course of this research.Many elements are only visions and plans, inthe process of being born.

Health Policy

National Health Plans.

In 1994, the African Na-tional Congress (ANC) published

A NationalHealth Plan for South Africa

.

25

This document,developed in consultation with WHO andUNICEF, has provided a vision for the Ministryof Health in developing a national plan totransform the health system. Although the vi-sion promoted by the ANC has not been fullyembraced by the new coalition government,many of the concepts of the ANC’s nationalhealth plan were integrated into the govern-

Table 1

Characteristics of Key Informants

Characteristic Number

GenderFemale 21Male 12

RaceWhite 25Black 7Colored 1

DisciplineNursing 12Medicine 10Pharmacy 4Social work 3Pastoral care 2Physical therapy 1Business 1

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Vol. 17 No. 1 January 1999 Policy and Cancer Pain in South Africa 19

ment’s official policy to guide the restructuringof the national health system toward universalprimary health care.

26

Table 2 summarizes thestrengths of these documents in terms of can-cer pain management.

Noteworthy in the ANC plan is a section onpalliative care, designed “to ensure that peoplewith terminal or incurable illness receive af-fordable and effective care including relieffrom pain and other symptoms” (p. 52). Spe-cific mechanisms to achieve this aim are identi-fied and include:

1. encouraging and assisting families and com-munities to care for people in their ownhome;

2. encouraging and supporting religious groupsand nongovernmental organizations such asthe hospice movement working in the fieldof palliative care;

3. building multidisciplinary teams, includingmedical specialists, to train and supporthealth workers at primary, secondary, andtertiary levels in the techniques of pain andsymptom relief.

In spite of these guidelines, the concept of pal-liative care is not fully integrated into other as-pects of the national health plan or the restruc-turing effort. For example, palliation is notspecifically mentioned as part of the role ofcommunity health centers. The plan for primarycare includes “community nursing and homecare services, including care of the terminallyill (with community organizations and relevantNGOs (nongovernmental organizations))” aspart of personal primary health care services.

The role of the primary health care nurse(PHCN) is as a front-line provider of care. The

policy addresses the current gaps and educa-tional requirements to prepare nurses to func-tion at this level. The “one key training priorityconcerns the new role of PHCNs in handling,prescribing, and dispensing drugs” (p. 26).Historically, nursing education has placed littleemphasis on primary care and prescriptivepractice. Until the education of nurses shifts toeffectively prepare these PHCNs, the imple-mentation of the primary health care systemwill face a significant barrier.

Finally, it is important to note the dilemmaof competing priorities as a potential nationalproblem. The government has appropriatelyprioritized high problem areas such as mater-nal

/

child health, nutrition, common diseasesincluding tuberculosis and human immunode-ficiency virus (HIV), and violence. As one in-formant explained, “if a patient hasn’t even gotclean drinking water, it’s very difficult then totreat cancer pain. These other areas are moreimportant.” However, control of common can-cers is identified as a priority area. This priorityis important as clearly early detection andtreatment of potentially curable cancers arekey strategies for preventing the problem ofcancer pain. For example, there has been littleattention paid to screening for cervical canceramong the black and colored populations.Thus many women are detected at a late stageand treated palliatively with radiotherapy. Ade-quate resources are needed to not only pre-vent, detect, and control cancer but also toameliorate the pain and suffering that often ac-companies the diseases.

National Drug Policy.

In January of 1996, theHealth Ministry published a

National Drug Pol-icy

(NDP).

27

Numerous role players contrib-

Table 2

Elements of National Health Plan That Will Promote Effective Pain Management

Emphasis on health versus diseaseDevelopment of standards, guidelines, and norms congruent with international norms and standardsValue placed on teamwork including in primary careCompassionate nature of health care deliveryRedressing the inequities of apartheidIncreased accessibility of rural health servicesEncouragement of intersectoral approaches that could promote collaboration between regulators

and professionalsIntegration of traditional and nontraditional healersRecognition of role of nurses in health services, especially primary carePriority placed on control of common cancers and compassionate care for patients with HIV/AIDS

Page 5: Health Policy, Health Services, and Cancer Pain Management in the New South Africa

20 Beck Vol. 17 No. 1 January 1999

uted to the development of the policy; techni-cal assistance was provided by the WHO ActionProgram on Essential Drugs. The NDP aims toensure an adequate and reliable supply of safe,cost-effective drugs of an acceptable quality toall citizens and to ensure the rational use ofdrugs by prescribers, dispensers, and consum-ers. There are several key elements of the pol-icy that will promote adequate drug availabilityand use—key strategies for effective pain man-agement (see Table 3). Many of these elementsfunctioned as part of the previous governmen-tal infrastructure and were appropriately incor-porated into the new apparatus.

The publication of the first

Essential Drug Pro-gram: Essential Drug List (EDL) for Primary HealthCare

28

in April 1996 quickly followed the re-lease of the NDP. The inclusion of paraceta-mol (acetaminophen), codeine, and morphineon the EDL for primary health care is a signifi-cant step toward improving drug availabilityand serves as an international example. Thepivotal role of several “cancer pain crusaders”both within the Ministry of Health and in non-governmental organizations was noteworthy inthis achievement as these drugs were not in-cluded in the original list.

Standard treatment guidelines accompanythe EDL and direct the primary care practi-tioner in the use of these drugs in managingpain and cancer pain specifically. The guide-lines are consistent with the WHO standards to

some extent in that three steps based on painseverity are included. The use of adjuvant drugs,including nonopioids at each stage, wouldmake the guideline congruent with the

ThreeStep Analgesic Ladder

. The guideline indicatesthe need for special training of health workers,an essential strategy for the effective manage-ment of pain at the primary health care level.

Implementation.

Health planning to imple-ment and expand these guiding policy docu-ments is under way at multiple levels. At a na-tional level, in mid-1996 the Ministry of Healthappointed a Technical Committee: NationalCancer Control Program to develop policy pro-posals regarding cancer control. Palliation,with pain control as a priority, forms part ofthe policy development process. Regionally,many provinces are developing provincialhealth plans that address cancer control. Forexample, the Cancer Association of South Af-rica (CANSA) and Health Department of theNorthern Province jointly sponsored a cancercontrol planning meeting in August of 1996.Coordination of these planning efforts will beessential to minimize duplicative or contradic-tory approaches. Integration of health serviceswithin the government and with nongovern-mental organizations that play a key role incancer control and palliative care will facilitatean effective and efficient system of cancer care.

Table 3

Elements of National Drug Policy That Will Promote Effective Pain Management

Only drugs that are registered in South Africa may be imported, produced, stored, exported and sold.Only practitioners and premises that are registered and/or licensed may manufacture, supply, and

dispense drugs.Drug legislation and regulations will be supported by an adequate and effective drug inspection service

under the direction of the Medicine Control Council.All drugs at the primary care level will be supplied free of charge. At the secondary and tertiary levels, a

fixed affordable copayment for drugs supplied by the state will be levied.The aims will be achieved through the establishment of an Essential Drugs Program. Essential drugs are

those required to treat the majority of prevalent conditions in a cost-effective manner.Standard Operating Procedures will be developed to cover all administrative procedures to manage and

control effectively the storage and distribution of drugs.Rational use of drugs will be achieved through appropriate training and the provision of scientifically

validated drug information for professionals and the community, and enhancing the education and clinical role of the pharmacist.

Training institutions will be transformed so that they produce health care professionals who functioneffectively and efficiently to meet the country’s health care needs. Incentives

a

will be used to encouragepractitioners to move to underserviced areas. Priority training needs are identified for medical doctors,nurses, and pharmacists.

Statutory councils will be encouraged to introduce a requirement for continuing competence as a basisfor periodic renewal of registration.

a

Recent proposals have included mandatory service in underserved areas.

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Vol. 17 No. 1 January 1999 Policy and Cancer Pain in South Africa 21

Several informants expressed concern thatmany of the plans of the new government onlyexist on paper; they are not yet a reality. How-ever, one informant aptly identified the poten-tial that exists as an asset. “We are in that tran-sitional period . . . I believe we do have thepotential because we do have the facilities, wedo have the potential infrastructure with theway that the new health system is, to be able tomanage pain effectively.”

Health Services

Two Systems of Care: Private and Public.

Histori-cally, health services in South Africa werehighly fragmented, biased toward curative careand the private sector, inequitable, and ineffi-cient. A two-tier system still exists: privatehealth care funded by medical schemes (i.e.,insurance plans) and covering up to 20% ofthe population, the vast majority of whom arewhite; and a public sector characterized by irra-tional use of resources, poor working condi-tions, and an inadequate infrastructure.

29,30

Disparities in health care expenditures resultin inequities between the two systems. Al-though the new national health plan aims atreversing these patterns by providing healthcare for all, this goal is yet to become a reality.In remote rural areas, people often live with-out good drinking water, electricity, or accessto care. In large urban settings, modern hospi-tals and clinics provide services in both the pri-vate (almost all white) and public (integrated)sectors. Most nonwhites still live in poverty-stricken townships outside of the cities; hospi-tals and clinics for blacks in these areas con-tinue to coexist with the now integrated publichospitals in the cities. Cancer care is providedthrough specialized centers located in urbanareas in both the public and private sector.Most of these centers are organized aroundtraditional subspecialties, i.e., radiation ther-apy; surgical oncology; medical oncology, etc.

There was disagreement among the respon-dents regarding whether or not there was varia-tion in how pain was managed based on thesetting being private versus public. Some infor-mants characterized this distinction as one be-tween “the first world and the third world”within South Africa. Three informants feltthere was not a difference; three felt the carewas different but still effective, and two infor-

mants did not know whether there was a differ-ence. Another strongly asserted that pain was“not well managed” in the private setting andtwo expressed concern over the possible over-treatment of patients in the private sector. Ad-ditionally, two hospices reported problemswith how oral morphine syrup is prepared inthe private pharmacy setting.

Nine expressed a belief that the practice wassuperior in the private setting and describedadvantages such as more access to specialistsand support, better drug availability, and accessto alternative forms of drug delivery includingfentanyl stickers (patches) and patient-con-trolled analgesia. One informant summarized,“Traditionally the first world has been quitewell catered for, through the private hospitalsand private clinics, very well catered for . . .”

Some informants felt that effective painmanagement was also provided in the publicsector, particularly in oncology centers locatedin academic tertiary care hospitals. Services in-cluding prescription medications are providedto anyone at these hospitals based on a slidingscale with support for the indigent. This systemhas resulted in many patients using tertiarycare resources for services that might be pro-vided at a secondary or primary care level.

Unfortunately, the public sector has beenlimited in its capacity and health care is not ac-cessible to many South Africans, particularlythose in the outlying and rural areas. As onephysician explained, “I mean there are just nopharmacies available, there are just no clinicsin those rural areas, and I think there are verymany, we know there are thousands out therewho are just not being cared for.” Not only isaccess to centers specializing in cancer carelimited to the urban areas, patients often haveto travel very far to these urban centers just toreceive pain medication. One pharmacist whoused to practice in a former homeland ex-plained “if the patients are very poor, they’vegot no money, they don’t have transport . . . Itwas available, but the people then couldn’treach it.” Another informant described how“black patients . . . are sent back to either theirtownship or their rural area with a pocket ofpanado (paracetamol) or codeine tablets whichrun out, and when I see some of the patientsand what condition they have, I know they aregoing to be in agony. Now what do they do,where do they go?”

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22 Beck Vol. 17 No. 1 January 1999

One vestige of apartheid-style medical careare the large black public hospitals that oftenserve a vast geographic area. These hospitalshave been plagued by lack of resources and in-efficient systems. As one physician explained,“Well there’s nothing that works well. The sys-tem is very cumbersome. It’s very bureaucraticand cumbersome . . . Even when you thoughtyou’ve got something to work, when you turnyour attention to something else—now itshould keep up its own momentum—it fallsright back and you have to pick the pieces up.”During an observation at a clinic in one ofthese hospitals, a patient in pain was not pre-scribed the appropriate analgesic because shewould not have been able to maneuver the dis-tance and long waiting time at the one phar-macy for all the clinics. Patients from thesehospitals are admitted for weeks at a time andthen transported by bus daily to academic cen-ters that provide radiotherapy services. Hun-dreds of patients in pain spend their days wait-ing in radiation therapy departments until allpatients from their hospital have completedtheir treatment and they can all be bussed back.

A major advance was made April 1, 1996;free primary health care including medicationswas officially made available to all through pri-mary health care clinics. Unfortunately, the in-frastructure, including physical facilities andsufficient and trained health professionals, toimplement this challenge is still under devel-opment. By the end of 1996, almost 100 newprimary care clinics were opened, funded by aredistribution of resources from academicmedical centers. These clinics represent initialsgains in a plan to build and staff 780 such clin-ics over the next 3 years.

29

A limited number of pain clinics are avail-able in both the private and public sector.There are a total of seven clinics affiliated withthe Pain Management Society that specializein the management of pain. There is not evenone in each of the nine provinces and they areall in urban areas. Informants felt that theseclinics served as an important resource for thesmall percent of patients whose pain cannotbe relieved by standard approaches and whomay need nerve blocks or other invasive ap-proaches. An exemplary situation exists at onepublic hospital where there is a close collabo-ration between the oncology center and painclinic.

Nongovernmental Organizations.

Health servicesprovided by both the private and public sectorare complemented by the services provided bynongovernmental organizations which arefunded primarily through donations. Almostall informants mentioned the important roleof the Cancer Association of South Africa(CANSA) and hospices. Historically, these or-ganizations have not been very accessible to pa-tients in the rural areas. In the past 3 years,these organizations have been aggressively ex-tending their services to the nonwhite commu-nities and rural areas. For example, one largehospice has “unbundled” their strong central-ized services and developed four community-based programs within 9 months as part of astrategic plan to implement 20 community-based programs by the year 2000. CANSA haseffectively implemented a role for communitydevelopers who are extending their services inthe black and colored townships.

CANSA was established in 1931 and is theonly NGO in South Africa with the sole pur-pose of fighting cancer. Through six regionsand 33 area offices, CANSA supports research,health promotion, and provides patient careservices. One critical role CANSA plays is inproviding and supporting the continuing edu-cation of health professionals and volunteers.Supportive services to patients and families areoffered by phone, clinics, day care settings, in-terim homes, “hospitia,” and through a com-munity-based home care program. Informantsidentified three major ways in which theCANSA directly supports effective pain man-agement: educating the patient and family onhow to best manage their pain; serving as anextension of hospital and clinic services by li-aising with the doctor or nurse; and providingresources such as syringe drivers (pumps forsubcutaneous drug infusion), food, and trans-portation to pick up medications or take pa-tients to see their doctor. One communityworker described the effectiveness of this sup-port. “Sometimes we need to involve ournurses from the cancer association. They liaisewith their doctor and they prescribe somethinglike morphine . . . So we . . . come in just to ed-ucate the patient that they are supposed totake it every four hours . . . and to specify thetimes. And as soon as the patient adheres tothe times given by the nurse, then the pain sub-sides . . .”

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Vol. 17 No. 1 January 1999 Policy and Cancer Pain in South Africa 23

The Hospice Association of South Africaserves as a coordinating body for over 30 hos-pices located in seven of South Africa’s nineprovinces. These hospices model the Britishsystem of interdisciplinary, 24-hour care, andoften include inpatient, daycare, and mobileclinics, and domiciliary (home care) services.One informant affirmed the important role ofhospice in pain management. “I think youcould say, with a great degree of safety—if itwere not for the hospice organization in thiscountry, pain control would be a huge prob-lem. I think we have done pioneering work,and we have learned from it and we havelearned from other countries in teaching it”.Other NGOs and churches play a valuable rolein promoting pain management by providingconcrete resources such as food, clothing, andtransport.

Variations in Practice.

The investigator particu-larly probed for variations in how health ser-

vices were delivered that might influence themanagement of cancer pain. Variations arebased on differences in settings and providers.Table 4 presents sample quotes to illustrateeach category of variation. In addition, one in-formant felt there was a difference based onwhether the provider was a doctor or a nurseand another felt the care varied between theinpatient and outpatient settings. These varia-tions are key to understanding the problems inhow pain is managed. As one moves from spe-cialized centers in urban areas to remote ruralvillages, the elements essential to effective painmanagement dwindle.

One of the main factors contributing to thevariations in practice is the lack of formal stan-dards to guide professional practice in eitherthe adult or pediatric populations. Althoughsome settings have integrated standard formsto guide pain assessment, written protocols toguide pain management are not readily avail-able. Yet in many settings, the informant could

Table 4

Examples of Variations in Practice Due to Setting and Practitioner

Type of variation in practice Sample quotations

Specialized vs. general “It’s not a problem specifically working with oncology patients but in other wards it is a problem.”

“It is a problem in all settings—it is probably better managed in oncology units.”

“Cancer pain is best managed in the palliative care environment.”“But people treated by Cancer Association, I think they’ve got

continuity because they’ve allocated sisters to a specific geographical area or patient. The hospice association does the same. So (continuity) depending on who delivers the care.”

Urban vs. township vs. rural “Well in the rural areas there are more problems. Because in the first place, financial, all these people stay far and the transport to reach the places where they can get help becomes also a problem. And most of the services, they are mostly in urban areas rather than rural areas. So someone has to travel from the rural area to the urban areas to get, say, the medication for pain.”

“The rural areas I think is dodgy—dodgy being a euphemism for zilch—but it’s when you go into the sparsely populated big areas like Northeastern Cape and suchlike where it is poor . . . obviously if there is poor general health care provision—palliative medicine is going to be right at the tail end of that.”

“Once again, it is a question of where you are and what your income is: so if you are a professional person, living in a big city and can afford the drugs that are available; but if you live in the rural areas and you are underprivileged or unemployed, you are in trouble.”

“Yes, I still think the urban areas outside the big centers, and even in the big townships, the Khayelitshas of the world, the Sowetos of the world, . . . and I think that people are just trying to stay alive in a lot of places, so taking care of the terminally ill is just not a priority.”

Individual practitioner “There are so many private institutions in this country and the doctors and the specialists are in charge and they have their sort of set rules and they do their fads and fancies and their routines.”

“Every expert in every university has got his own ideas and approaches.”

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24 Beck Vol. 17 No. 1 January 1999

clearly describe the standard approach used intheir setting for assessing and/or managingpain. As one explained, “I would say it is reallytradition.” These traditions were often, althoughnot always, consistent with the WHO AnalgesicLadder.

Professional associations can play a majorrole in establishing standards. For example,the South African Society of Medical Oncologyhas developed therapeutic guidelines for thesystemic treatment of cancer. Such guidelinesfor pain management could help to establishand systematic approach in multiple settings.National standards will be of critical impor-tance to the implementation of the primaryhealth care system. As previously mentioned, apreliminary standard was included in the EDLfor Primary Health Care.

28

The Ministry ofHealth, Directorate, Chronic Diseases, Disabili-ties and Geriatrics has issued a

Working Paper:Standard Treatment Guidelines for PharmaceuticalManagement of Terminal Cancer Pain at PrimaryLevel

. This standard includes the key elementssuch as the WHO Analgesic Ladder.

Summary and Recommendations from Informants.

The majority of informants agreed to the fol-lowing points:

• Cancer pain is a common and significantproblem;

• No standards existed to guide pain practiceacross settings;

• Variations in practice, by provider, setting,and geographic location influenced painrelief;

• Access to care is a barrier to pain manage-ment especially in the rural areas;

• Specialized resources (e.g., pain clinics, hos-pice, CANSA) enhance pain management;

• The new government and evolving policyprovided new opportunities to redress formerinequities and improve pain management;

• Converting the policy from paper to actionfaces formidable challenges but is necessaryto make a difference.

The investigator also asked each informant“what recommendations would you suggest toimprove cancer pain management in South Af-rica?” The recommendations relevant to healthpolicy and health services are summarized inTable 5. Other recommendations related toeducation of students, health professionals, thepatients, and the public and improved caregiv-ing and communication.

31,32

Discussion

Few countries have the opportunity to de-velop health policy during a period of suchprofound governmental transformation. Thenewly developed health policies in South Af-rica have built on the strengths of existing in-frastructure and laws while setting a path foran entirely new paradigm of health care deliv-ery, a model built upon a foundation of univer-sal primary health care. The initial steps to in-tegrate cancer pain management into a primaryhealth care model are exemplary. Front-linehealth care providers with adequate educationin palliative care and appropriate drugs will sig-nificantly enhance access to cancer pain relief.Within primary health care services, palliativecare including pain and symptom manage-ment must happen in the hospital, communityhealth center, primary health clinic, and homelevel. Integrating the concept of palliative careinto health care services at every level and thecompletion of a national standard to guide

Table 5

Summary of Informant Recommendations to Improve Cancer Pain Relief

• Including palliative care as a integral part of health services at every level;• Finalizing and implementing a national policy on palliative care and cancer pain management;• Improving availability, access, and financial support for hospice services;• Ensuring equity in the distribution of health care services, resources, and drug availability;• Implementing the primary health care system to include standards, authority, training, and support for

primary health care nurses to manage cancer pain;• Ensuring that drugs on the Essential Drug List are available in all settings and free or affordable;• Developing interdisciplinary cancer centers with satellites in the periphery;• Improving the availability of consultation with experts in pain management through pain clinics, the

Pain Management Society, or a national pain resource center; and• Improving collaboration and communication between regulators and other leaders within the

Department of Health.

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Vol. 17 No. 1 January 1999 Policy and Cancer Pain in South Africa 25

practice would strengthen the national policy.The influence of international organizationssuch as WHO continues to be a strength inhealth policy development.

The transition from policy to practice, how-ever, faces formidable obstacles.

29

The neolib-eral macroeconomic policies have led to signif-icant delays in the promised reconstructionand development.

30

The government’s failureto meet basic needs such as housing and elec-tricity will negatively influence health. There isincreasing pressure for fiscal restraint and adrive for the private health care sector to moveto U.S. style managed care.

29

The currenthealth care transformation has not begun totackle the issues and integration of privatehealth care into the new delivery system.

33

Thus, while the Department of Health hasmade significant gains in policy, its ability tomove forward in implementation will be con-strained by the evolving and complex political–economic climate.

Health services in South Africa have beenplagued by inequity and inadequate resources.New health policies have set a path to ensureuniversal access to health care including pallia-tive care for cancer. Their successful imple-mentation is the next necessary step toward im-proving health services and alleviating thesuffering of increasing numbers of individualswith cancer. The investigator concurs with thespecific recommendations to improve the sta-tus of cancer pain management identified bykey informants (see Table 5).

The relief of cancer pain internationally re-quires aggressive and global solutions. Interna-tional exchange of ideas and expertise can fa-cilitate the ability of individual countries tolearn from the trials and successes of others.Such exchange can pave the way for interna-tional partnerships to address the issues in can-cer care today.

34

Such partnerships are particu-lar important with countries in the developingworld. For example, in sub-Saharan Africa (ex-cluding South Africa) there are fewer than 75cancer health professionals specialized in on-cology for a population of 300 million. No pal-liative care is available to 8 or 9 of 10 patientsin these developing countries.

3

The problemof cancer pain extends beyond South Africa’sborders. Many residents and workers in SouthAfrica come from neighboring countries.South Africa, as a leader in the sub-Saharan re-

gion, is challenged not only to solve its ownproblems but to serve as a role model and re-source to its neighbors in the development ofcancer control and palliative care programs.

Acknowledgment

The author gratefully acknowledges Profes-sor Geoffrey Falkson, Professor and Head, De-partment of Medical Oncology at the Univer-sity of Pretoria, Pretoria, South Africa and allof the individuals in South African govern-ment, education, and service who contributedto the substantive content of this report. Sup-ported by a Fulbright Scholarship, Council forthe International Exchange of Scholars andthe United States Information Service, January–September 1996.

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