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Overview and Recommendations

Human Rights Watch | October 2009

Palliative care nurses and volunteers check up ona 67-year-old woman, who is paralyzed and takingmorphine for pain in south Kerala.

Photographs by Brent Foster

UNBEARABLE PAIN

As Iqbal sought and later underwent treatment, hedeveloped a piercing chest pain that became excruciating.Though he repeatedly informed his doctors, he found themunresponsive. In an interview with Human Rights Watch, hesaid, “They sent me here, there, everywhere but nobody everasked me if I had pain.” As the pain got worse and no

treatment was forthcoming from his healthcare providers,Iqbal unsuccessfully tried to self-medicate with paracetamolfrom a local pharmacy. Ultimately, his pain got so bad that hewished that “God would take me away...”1

Raj Ramachandran, a rubber-tapper from a small villagein Kerala, had a similar experience. Ramachandran developed

4 Unbearable Pain

In late 2007 Muzaffar Iqbal, a65-year-old rickshaw driverfrom a small village in AndhraPradesh, first noticed a growthnear his right armpit. When thegrowth became painful, hewent to a local doctor who gavehim a basic painkiller andsuggested that he undergo abiopsy. Iqbal learned that hehad lung cancer.

Dr M.R. Rajagopal, a palliative care physician,consults a breast cancer patient (in blue sari)in Kerala.

a swelling in his neck in 2006, which turned out to be cancerof the parotid gland. After initial surgery seemed successful,Ramachandran had a recurrence in March 2007. Shortly after,he developed severe pain. Ramachandran’s doctors wouldgive him some medications when he discussed his pain withthem but, he said, the paracetamol his wife bought at the

local pharmacy brought more relief than the medications hereceived from his doctors. His pain became so severe that hecould no longer sleep, could not lie down, and wanted to endhis life.2

Stories of suffering like those of Muzaffar Iqbal and RajRamachandran are all too common in India. Although

Human Rights Watch | October 2009 5

A paralyzed cancer patient outside the palliative careunit at MNJ Institute of Oncology, Hyderabad.

8 Unbearable Pain

Palliative care nurses and volunteers walk to see a patient in the rural areas of south Kerala.

enormous problems exist with availability and accessibility ofhealth services at all levels of care in India—due to limitedresources and weak public healthcare services—the sufferingof patients like Iqbal and Ramachandran can be easily andcheaply prevented. Morphine, the key medication for treatingmoderate to severe pain, is inexpensive, highly effective, andgenerally not complicated to administer.

Palliative care—a field of medicine that does not seek tocure but to improve the quality of life of patients with life-limiting illnesses3—can be delivered at limited cost both inthe community through home-based care and at healthcarecenters. It includes treatment of pain and of other problems,whether physical, psychosocial, or spiritual. Indeed, afterconsiderable suffering, both Iqbal and Ramachandran endedup being cared for by palliative care programs—one offeredby a cancer hospital in Andhra Pradesh, the other by anongovernmental organization (NGO) in Kerala—where theyreceived proper treatment for their pain, as well as psycho-logical and spiritual support.

In this respect, Iqbal and Ramachandran are theexceptions. Leading palliative care experts in India estimatethat more than one million people in India suffer frommoderate to severe pain every year due to advanced cancer.That number rises considerably once people with non-advanced cancer, HIV and AIDS, and a variety of otherprogressive, incurable or otherwise life-limiting healthconditions are included. These experts believe that morethan seven million people may suffer from pain and othersymptoms due to such illnesses and conditions illnessesannually. Only a small fraction of these people have access toadequate palliative health services. In 2008 India used anamount of morphine that was sufficient to adequately treatduring that year only about 40,000 patients suffering frommoderate to severe pain due to advanced cancer, about 4percent of those requiring it.

Most patients with advanced cancer are simply senthome when curative treatment options—or money to pay forsuch treatment—are exhausted. Abandoned by thehealthcare system at arguably the most vulnerable time oftheir lives, they face pain, fear, and anguish without profes-sional support, and die in the confines of their homes. Evenmost large cancer hospitals in India, including 18 of 29government-designated lead cancer centers, do not havepersonnel trained in palliative care or morphine and otherstrong pain medications. This is particularly startling giventhat about 70 percent of the patients seen at these hospitalsare at such an advanced stage of cancer upon arrival that theyare beyond cure; palliative care and pain management is theonly benefit they may still receive.

Similarly, people with HIV and AIDS, paraplegics,patients with advanced renal disease, or elderly people whosuffer from physical or psychological pain and require


palliative care services are unable to access them in mostparts of India. Like most cancer hospitals, the vast majority ofcommunity care centers for people living with HIV,antiretroviral clinics, or secondary and primary health centersdo not offer palliative care as they do not have the necessarymedications, including morphine, or trained healthcareworkers.

The World Health Organization (WHO) has recognizedpalliative care as an integral and essential part of compre-hensive care for cancer, HIV, and other health conditions. Withrespect to cancer, for example, it has noted that, despiteimprovements in survival rates,the majority of cancer patients will need palliative care sooneror later. In developing countries, the proportion requiringpalliative care is at least 80 percent. Worldwide, most cancers

are diagnosed when already advanced and incurable … [Forthese patients] the only realistic treatment option is pain reliefand palliative care.4

The WHO has urged countries to take action in threeareas—policy making, education, and drug availability—that itsees as fundamental for the development of palliative careand pain management services. It has observed that thesemeasures cost little but can have significant effect. In Indiamajor challenges exist in all three areas.

Government authorities in India, both at the central andstate level, have done too little to make sure that palliativecare and pain management services are available, or tofacilitate their provision by the private sector or nongovern-mental organizations. In fact, many state governmentscontinue to enact complex narcotics regulations that activelyimpede the availability of morphine, despite a key recommen-dation by the central government to simplify them.

10 Unbearable Pain

A nurse prepares to administer an IV for a 72-year-old palliative care patient in Kerala.

POLICY. The World Health Organization hasrecommended that countries establish a national palliativecare policy or program. In India, however, a national policy orprogram does not exist, even though they exist for variousother illnesses and conditions. The government has investedconsiderable resources in strengthening its cancer caresystem, but almost none of these funds have been allocatedto palliative care provision, despite the fact that the majorityof cancer patients require such services and the nationalcancer control program makes an explicit reference topalliative care. India’s national AIDS control program makesreference to palliative care but to date no palliative careservices for people living with HIV and AIDS have beendeveloped. No state palliative care policies exist in any ofIndia’s states and territories, with the exception of Kerala.

EDUCATION. The World Health Organization alsorecommends that countries ensure adequate instruction ofhealthcare workers on palliative care and pain treatment. Yet,in India official curricula for undergraduate and postgraduatemedical studies do not provide for any specific education onpalliative care and pain management. According to leadingpalliative care doctors, out of more than 300 medical colleges,only five in the entire country have integrated someinstruction on palliative care into subjects of the officialcurriculum. While a few teaching hospitals offer rotations inpalliative care units for postgraduate students in oncology oranesthesiology, most of these hospitals simply lack suchunits. As a result, the vast majority of medical doctors in Indiaare unfamiliar with even the most basic tenets of palliativecare or pain management.

DRUG AVAILABILITY. Finally, the World HealthOrganization recommends that countries establish a rationaldrug policy that ensures availability and accessibility of


A palliative care physician assesses a patient’s pain.

A 60-year-old palliative care patient with lung cancerat his home in northern Kerala.

essential medicines, including morphine. Because opioidsare controlled substances globally—and are thus not freelyavailable on the market—ensuring their availability formedical purposes is more complicated than it is for mostother drugs. States have an obligation under international lawto ensure both the availability of opioids for medical purposesand take steps to prevent their misuse.

While the Indian government, to its credit, recommendedin 1998 that states adopt narcotics regulations that create abalance between these two requirements (the Department ofRevenue’s “model rule”), two-thirds of India’s states havefailed to do so and maintain outdated regulations for opioid

medications that, in the words of India’s own nationalDepartment of Revenue, deny “easy availability of morphineto even terminally ill cancer patients” and have caused“undue sufferings and harassment” because they are “oftentoo strict and cumbersome.” Because of these regulations,many hospitals and pharmacies do not want to commit theamount of time it takes to go through the bureaucratic stepsrequired to obtain morphine, and thus simply do not stock it.Others find that the bureaucratic intricacies frequently resultin shortages and delays as bottlenecks and red tape interruptthe supply chain.

Policy, education, and drug availability barriers havecreated a vicious cycle: Because pain treatment and palliativecare are not priorities for the government, healthcare workersdo not receive the necessary training to provide these

14 Unbearable Pain

A breast cancer patient receives chemotherapy in Hyderabad, while herbrother-in-law watches over her.

services. This leads to widespread under-treatment, includingof pain, and to low demand for morphine. At the same time,complex procurement regulations discourage pharmacies andhospitals from stocking and healthcare workers fromprescribing it, again resulting in low demand. This, in turn,reinforces the low priority given to pain management andpalliative care.

Under the International Covenant on Economic, Socialand Cultural Rights, the Indian government has an obligationto take steps “to the maximum of its available resources” toachieve progressively all the rights in that covenant, includingthe right to health. Therefore the government should ensure

that patients who require palliative care and pain treatmentcan get access to these health services. In particular, it shouldformulate a plan for the development and implementation ofthese services, ensure the availability and accessibility ofmorphine and other medications that the World HealthOrganization considers essential, and ensure that healthcareproviders receive training in palliative care. The failure of theIndian government to do so violates the right to health.

The right to health also requires a rational and equitabledistribution of resources for healthcare services, based on thehealth needs of the population. The Indian government,however, while investing considerable resources into cancerand HIV services, has failed to make effective provision ofpalliative care, even though the need for such services isextremely high.


A sixteen-year-old bone cancer patient at the MNJ Institute of Oncologyin Hyderabad. Her leg has been amputated at the hip.

Under the prohibition of torture and ill-treatment, theIndian government has a positive obligation to take measuresto protect people under its jurisdiction from inhuman ordegrading treatment such as unnecessarily suffering fromextreme pain. As the UN special rapporteur on torture andother cruel, inhuman or degrading treatment or punishmenthas noted, “failure of governments to take reasonablemeasures to ensure accessibility of pain treatment … raisesquestions whether they have adequately discharged thisobligation.” The fact that many of the government-designatedregional cancer centers in India, which treat very largenumbers of patients who require palliative care, do not offerit, do not stock morphine, and do not have healthcare workerson staff who have been trained in palliative care, stronglysuggests that the Indian government has not taken any such

reasonable measures. It may thus be liable under theprohibition of torture and cruel, inhuman, or degradingtreatment for the unnecessary suffering of patients withsevere pain and other symptoms at such regional cancercenters.

In order to end this unnecessary suffering, the Indiangovernment will need to recognize the urgency of the problemand take proactive steps. Faced with similar situations,several other countries in Asia and elsewhere have organizedmeetings at which all relevant parties—health authorities,drug regulators, palliative care groups, and others—havebeen brought together to develop a comprehensive strategyfor developing palliative care services and ensuring access topain medications. In several countries, these inter-agencymeetings have allowed a coordinated and comprehensiveapproach to removing the various barriers, whetherregulatory, educational, or otherwise, that impede thatprocess.

16 Unbearable Pain

A fourteen-year-old cancer patient in Hyderabad. He takes morphine to control his pain.

While developing palliative care services and integratingthem into the healthcare system is a significant challenge,India has a considerable advantage compared to most othercountries in the region. The southern state of Kerala is hometo one of the most effective community-based palliative carenetworks in the world. Outside Kerala there are a number ofstrong palliative care programs, based both in the communityand at healthcare institutions. Nongovernmental organi-zations, such as the Indian Association of Palliative Care, theInstitute of Palliative Medicine, and Pallium India, amongothers, have developed palliative care courses for healthcareworkers and have extensive experience providing suchtraining. Finally, the Department of Revenue’s model rule forsimplifying access to morphine has already been successfullyimplemented in several states. The central and stategovernments urgently need to draw on these experiences todevelop effective plans of action that guarantee access topalliative care and pain treatment.

This report focuses specifically on the poor availabilityof palliative care services in India. Human Rights Watch,however, fully recognizes the enormous problems that existwith poor availability and accessibility of health services atall levels of care in India, as a result of resource problems,inadequate infrastructure, shortages of medicines, and weakpublic healthcare services. The fact that this report focuseson a specific area of healthcare does not suggest thatgovernment authorities in India do not have an obligationunder international human rights law to take reasonablesteps to address problems in other parts of the healthcaresystem.


1 Human Rights Watch interview with Muzaffar Iqbal (pseudonym),

Hyderabad, India, March 28, 2008.

2 Human Rights Watch interview with Raj Ramachandran (pseudonym),

Kerala, March 22,2008.

3 While palliative care is often associated with terminal illness, it can

benefit patients with a much broader group of illnesses or health

conditions. Palliative care advocates use the term “life-limiting” illness or

health condition to delineate the group of patients who would benefit from

the services provided by palliative care, including symptom control, pain

treatment, psychosocial and spiritual support and others. A life-limiting

illness or health condition is a chronic condition that limits or has the

potential to limit the patient’s ability to lead a normal life and includes,

among others, cancer, HIV/AIDS, dementia, heart, renal, and liver disease,

and permanent serious injury.

4 World Health Organization (WHO), “National Cancer Control Programmes:

Policies and Managerial Guidelines, second edition,” 2002, pp. 86-87.

18 Unbearable Pain

A 72- year-old lung cancer patient is cared for by his wifein Kovalam, south Kerala.

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© 2009 John Emerson

States in which Human Rights Watch conducted field research on palliative care

20 Unbearable Pain

The Indian government and state governments should, in consultation with stakeholders,immediately develop action plans to ensure access to palliative care and pain managementnationwide. In particular, they should:

• Develop national and state palliative care policies and strategies, and identify specificbenchmarks and timelines for implementation. These should provide for both theestablishment of institution-based and community-based palliative care.

• Integrate meaningful palliative care strategies into national cancer and HIV/AIDS controlprograms.

• Mandate basic instruction on palliative care into the curriculum for all medical colleges.

• Adopt and operationalize throughout the country the model rule on morphine availabilityand remove any other regulatory barriers that arbitrarily impede access to opioidmedications, while ensuring adequate control to prevent their misuse.

• Expand palliative care services to all regional cancer centers and adopt a clear plan ofaction for the establishment of such services at other cancer hospitals.

• Ensure that oral morphine is included in essential medicines lists, and that medicationsincluded are available in practice.

KEY RECOMMENDATIONS


This report is based on research conducted over aone-year period, including field visits to India inMarch-April 2008 and February 2009. Our fieldresearch was conducted primarily in the states ofAndhra Pradesh, Kerala, Rajasthan, and West Bengal.We chose these states because of their differentlevels of palliative care development and theirgeographic spread. Additional research wasconducted in Delhi (National Capital Territory) and inthe state of Uttar Pradesh. We also conducted deskresearch regarding palliative care availability invarious other states.

Over the course of five weeks in the field, HumanRights Watch researchers conducted 111 interviewswith a wide variety of stakeholders, including 38people with cancer, HIV/AIDS patients, and a varietyof other life-limiting health conditions; 59 healthcareworkers, including oncologists, AIDS doctors,anesthesiologists, palliative care doctors, andadministrators of hospitals, hospices, and palliativecare programs; and drug control and health officials.

We made a decision, based on ethical considerations,not to interview people who did not have realisticaccess to basic palliative care and pain treatmentservices: We felt that it would be unethical to askpeople to discuss in detail their pain and othersymptoms or their—often terminal—illness if they hadno possibility of accessing appropriate professionalhelp. As a result, the patients we interviewed wereprivileged compared to the average patient with life-limiting disease in India in that they had gainedaccess to palliative care services (although many hadexperienced long periods without such access andhad consequently experienced terrible suffering). Thepicture that can be construed from our interviewstherefore does not fully capture the deprivation andanguish caused by poor availability of palliative careand pain treatment services.

One implication of this decision was that weconducted our research mostly in states and athealthcare institutions with some form of palliativecare. In West Bengal, where the dearth of palliativecare and pain management provision was particularly

severe at the time, we did not seek to interview anypatients, instead focusing on healthcare workers andgovernment officials.

Most interviews with patients were conducted athealthcare institutions such as hospitals andpalliative care providers, or in communities at ad hocoutpatient clinics or in palliative care patients’ ownhomes. At healthcare facilities we interviewed bothoutpatients and inpatients. Where possible,interviews were conducted in private. Interviews weresemi-structured and covered a range of topics relatedto palliative care and pain treatment. Before eachinterview we informed interviewees of its purpose,informed them of the kinds of issues that would becovered, and asked whether they wanted toparticipate. We informed them that they coulddiscontinue the interview at any time or decline toanswer any specific questions, without consequence.No incentives were offered or provided to personsinterviewed. We have disguised the identities of allpatients we interviewed in this report to protect theirprivacy. The identities of some other intervieweeshave also been withheld at their request.

Interviews with healthcare workers and officials wereconducted in English. Most interviews with patientswere conducted in local languages—Bengali, Hindi,Malayalam, Rajasthani, Telegu, and Urdu—with theassistance of translators. All translators we used wereaffiliated with local palliative care programs to ensurethat they understood the sensitivities of interviewingpatients with serious illnesses as well as the basicsof palliative care and pain management.

In July 2009 Human Rights Watch wrote detailedletters summarizing the findings of its research to theMinistry of Health and Family Welfare and the MedicalCouncil of India, inviting them to respond to thefindings and offering to present comments in thisreport. Copies of the letters are included in this reportin Annexes 4 and 5. When this report went to print inearly October 2009, no responses had yet beenreceived.

All documents cited in the report are either publiclyavailable or on file with Human Rights Watch.

METHODOLOGY

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