The Plight of Patients [33]

The Suffering Caused by Untreated Pain

Relieve my pain or let me die.

—Zaid, a patient at Hyderabad cancer hospital, Andhra Pradesh, writhing with pain before receiving pain treatment[34]

It felt as if someone was pricking me with needles. I just kept crying [throughout the night]. With that pain you think death is the only solution.

—Priya, Hyderabad[35]

As we note in the overview, above, the physical, psychological, and social consequences of moderate to severe pain on individuals have been documented extensively. In interviews with Human Rights Watch, patients in India who had experienced pain described these consequences, but they also described something that is not easily captured in quantitative studies: the personal and family tragedies that each case represents and the overwhelming sense of despair that many experience at being trapped by relentless pain, fear, and anguish.

The testimony of Sherin, a construction worker in Kerala who suffered spinal cord injury, is typical. He told Human Rights Watch:

I was in an accident at a construction site on 9 August 2004. A wall collapsed on me. People dragged me to the medical college hospital. For two days I had agonizing pain both in the back and the front. I felt like I was going very weak. I asked to see my children because I thought I would die.

I was told that I would be OK ... The doctors said that the pain would go away [by itself]. There was no need to medicate it. I was on an IV and was given lots of medicines. But I was told that no medications were needed for the pain. I was screaming all through the night.

The second week I started wasting, losing weight. I became skin and bone. I thought I wouldn’t survive. Terrible back pain continued. I was propped up onto four or five pillows and told not to turn onto my side. I was very afraid. Between the fear and the pain the suffering was intolerable.[36]

Many of these patients and their caregivers expressed a sentiment that Human Rights Watch commonly encounters when interviewing victims of police torture: They would do anything whatsoever to make the pain stop. In cases of police torture, many victims sign a confession to make that happen. Patients with severe pain whose doctors do not know how to treat it or have no access to medications like morphine often see death as the only way out.

Lakshmi Prasad of Trivandrum, Kerala, told Human Rights Watch that pain immobilized her late husband, a bone cancer patient, first forcing him to quit his job and then confining him to his chair most of the time as he could no longer lie down. At one point, his suffering became so bad that he told her he was going to jump off a building to commit suicide.[37] Srinivas Padakanti, a 16-year-old Hyderabad boy with osteosarcoma, a bone cancer, told Human Rights Watch that he had had “hellish pain” in his leg at the place of the malignancy before he was referred to a palliative care clinic. He said that the pain would drive him mad and made him suicidal.[38]

A number of doctors and other healthcare workers we interviewed also recounted stories of patients who saw death as the only way to end their suffering. Dr. Partha Basu of Chittaranjan National Cancer Institute in Kolkata, West Bengal, for example, told Human Rights Watch, “Even yesterday, there was a woman who had a terminal case of ovarian cancer. She was in terrible pain. The only thing she wanted was medicine to die.”[39] An HIV counselor in Kolkata recalled a 50-year-old patient with HIV and cancer who was in such pain that he asked the counselor for poison so he could end his life.[40]

Dilawar Joshi, a Nepali man in Hyderabad with a painful tumor in the leg, told Human Rights Watch that he wanted doctors to amputate his limb to stop the pain. He said:

My leg would burn like a chili on your tongue. The pain was so severe I felt like dying. I was very scared. I felt that it would be better to die than to have to bear this pain. [I thought] Just remove the leg, then it will be alright. Just get rid of the leg so I’ll be free of pain.[41]

Patients told Human Rights Watch that physical pain led to severe strain within their families. For example, in Hyderabad, Narasimha Rao, a 45-year-old man with colon cancer, said that pain led him to become angry: “I would shout at my wife and hit my children.”[42] Srinivas Padakanti, the Hyderabad boy with bone cancer, said that when he was in severe pain he became very angry. He said he beat even his mother, his primary caregiver.[43] Kamala Kanwar, a woman of about 40 from Rajasthan who has cervical cancer, said that when she was in severe pain she did not want to see her children because any kind of noise irritated and angered her.[44]

The Contrast: When Patients Do Gain Access to Pain Management

I came here [to the palliative care clinic] and took morphine. I felt like Dr. Rajagopal and Dr. Suresh restored my life.

—Prakash Kumar, a cancer patient in Calicut, Kerala[45]

Most physical suffering is avoidable when doctors have access to medications like morphine and have basic pain management skills. Similarly, basic counseling and other palliative care interventions can prevent or greatly mitigate suffering due to psychosocial symptoms. Indeed, many of the patients mentioned above told us how dramatically their quality of life had changed once they received access to palliative care services.

Zaid, the patient quoted at this chapter’s opening, calmed down shortly after he was administered morphine.[46] Priya told Human Rights Watch: “When I get morphine, I want to survive again and see my sons settle.”[47] Lakshmi Prasad said that although palliative care doctors were not able to completely control her husband’s pain with medications, his life became bearable again.[48] Dilawar Joshi said that he was “feeling good, comfortable with morphine.”[49]

Another patient, Aneesh Muraleedharan, a 47-year-old man with a stomach cancer, came to the palliative care unit at MNJ Institute of Oncology and Regional Cancer Centre (hereinafter MNJ Institute of Oncology), Hyderabad, in severe pain in March 2008. As he was waiting to see a doctor, Human Rights Watch interviewed his wife. Muraleedharan himself was lying on a bed in the corridor writhing in pain, constantly shifting around trying to find a position that would provide him some relief, his face contorted. After a doctor saw him, he was admitted to the hospital and provided with pain treatment. The next day, Muraleedharan was walking around the hospital and, when he saw the Human Rights Watch researcher, came over smiling.[50]

Also in Hyderabad a breast cancer patient, Shruti Sharma, said that she had had severe pain—she rated it as 9 on a scale where 10 represents the worst pain imaginable—that badly interfered with her sleep. She said, “I would sleep maybe an hour and a half per night. I could take any number of sleeping pills [without effect].” With morphine, her pain is under control. She said, “This place [the palliative care unit] is heaven-sent ... [With morphine] I can relax.”[51]

In late December 2007 Rohit Sreedharan, a 38-year-old man in Kerala, crashed his motorcycle into a concrete post and sustained a broken clavicle. After a week in a hospital he was sent home. He had severe pain in his arm. He said, “It was persistent like an electric shock.” For the next three weeks he was unable to sleep, and became withdrawn and inactive. After he was given morphine and some other medications, his pain was significantly reduced, he was able to sleep again, and started exercising his arm to regain function of his hand. By the time Human Rights Watch interviewed him in March 2008, Sreedharan was able to hold a spoon again and eat for himself.[52]

Issues around Gaining Access to Pain Management

Almost all of the 38 patients we interviewed had initially been denied access to palliative care and pain treatment. Although most eventually gained access to such services, they generally only did so after being refused adequate treatment at multiple hospitals. Even when they did access palliative care, they frequently had to travel long distances, complicating its delivery. Denial of palliative care due to its unavailability or inaccessibility violates the right to health when it results from government failure to take reasonable steps to make it available. In cases where suffering is particularly serious, and the state does not take reasonable action within its power to lessen it, the state may be responsible for cruel, inhuman and degrading treatment (this is discussed in detail in “The Human Rights Analysis,” below).

Denial of palliative care

Patients described several typical responses when they had discussed their pain and other symptoms with doctors at institutions that did not offer palliative care: They said that doctors frequently had failed to ask about distressing symptoms, ignored them or dismissed them as inevitable, offered inadequate pain treatment, or said that they were addressing their cause. Some patients described doctors apparently avoiding them. The lack of appropriate training for doctors and the poor availability of morphine in many hospitals and pharmacies are among the key reasons for such denial of care (see Chapter IV for more detail). In interviews with Human Rights Watch, several doctors expressed frustration about being unable to provide appropriate care to these patients.

Patients’ experiences

The case of Pillai, an HIV-positive man in Trivandrum, Kerala, is illustrative. Pillai fell ill with extrapulmonary tuberculosis of the spine in 2007 and developed severe pain. He told Human Rights Watch:

I had pain in my back and both legs. My legs twisted into an abnormal position. My legs would turn inside and my toes up. It was a pricking pain that was excruciating. I could not sleep as the pain was particularly bad at night.

Pillai went to a TB clinic in Trivandrum, where he was given treatment for the TB. When he described his excruciating pain, his doctor prescribed him 400 milligrams of ibuprofen, a weak painkiller, which, predictably, provided no relief. When he complained to his doctor that he continued to have pain his doctor told him, “With this disease, pain doesn’t just go away.” At the ART center, where Pillai was receiving antiretroviral treatment for his HIV, doctors told him, “Once you get better, the pain will go away.”[61]

While the kind of nerve pain Pillai suffered is relatively challenging to treat, a trained palliative care physician would almost certainly have been able to identify the need to relieve Pillai’s pain.[62] However, although Pillai received sophisticated medical treatment for TB and HIV at two government institutions, his doctors never made any adequate attempt to treat his pain.

Other patients said that doctors had given them weak pain medications when their pain was moderate to severe. For example, Srinivas Padakanti, the 16-year-old boy with bone cancer mentioned above, developed “hellish pain” that prevented him from walking and sleeping.[63] His doctor prescribed weak painkillers but these provided no relief. When Padakanti informed the doctor, he was told, “We have given you the tablets.” The doctor apparently felt that he had done all he could and that the issue was closed; Padakanti continued to live with pain. Only two months later, when he was referred to MNJ Institute of Oncology did he begin receiving stronger analgesics that helped him control his pain.

When Reddy, a 47-year-old man with a stomach cancer, complained of persistent and severe pain, his doctor in Andhra Pradesh told him, “Cancer means pain. There is nothing we can do.”[64] Reddy told Human Rights Watch that he rated his pain as 9 on a scale of 10. Sherin Mathew, the construction worker mentioned above, was told that there was no need to treat his pain as it was caused by internal bruising and would disappear as the swelling went down.[65] Similarly, when Rohit Sreedharan was hospitalized after his motorcycle accident, doctors did not provide him with any pain medications, even though he complained of severe pain in one of his arms. He said that the doctors told him, “The pain will be over when the clavicle heals.”[66] For three weeks he suffered from severe pain until he found a palliative care provider and began receiving morphine for his pain.

Although pain is sometimes called the fifth vital sign, few doctors in India, including many oncologists, make a habit of asking patients about pain. As noted above, Iqbal, the patient with lung cancer, told Human Rights Watch: “They [doctors] sent me here, there, everywhere. But nobody ever asked me if I had pain.”[67]

Dilawar Joshi, the Nepali man with a tumor in the leg, was one of very few people who had not brought up his pain with his doctor. He and his wife told Human Rights Watch: “We were scared to ask the doctor about the pain. People were shouting and screaming [in the hospital]. We were afraid that they might send us home. The doctors didn’t ask.”[68]

Healthcare workers’ experiences with patients in acute pain

An AIDS doctor at a large AIDS hospital explained that he and his colleagues tend to focus on the cause of the pain in patients because they have no other way of treating it. He told Human Rights Watch that “every second or third patient complains of neurological pain” and that most advanced AIDS patients have generalized pain. But he had never received any training on pain management: “I know how to treat fever, not pain.” Therefore, he said, the “focus is on the cause of the pain and trying to treat that.”[69]

Several healthcare workers who had received training on palliative care but worked at hospitals that did not have morphine expressed deep frustration to Human Rights Watch at not being able to provide adequate treatment. Rita Panda, a nurse with a clinic for HIV/AIDS patients in Kolkata, told Human Rights Watch, “Most patients come here with a lot of pain. We use ibuprofen. If morphine could be used that would be much better.”[70] Dr. Sarkar of Kolkata Medical College told Human Rights Watch he had to improvise with sub-optimal pain management strategies because his hospital did not have morphine, although a nearby pharmacy did have fentanyl patches, a potent but expensive pain reliever. He said:

I have a patient with extreme generalized bone pain that is not controlled by WHO step 1 drugs. I have added weak opioids. The family is not very affluent. I prescribed fentanyl patches because the patient was suffering. The pain was relieved. After 72 hours, the patient needed a fresh patch, and a fresh patch was given. After that, they [the family] couldn’t buy any more–there was no money. So they took the patient home ... She never came back.[71]

Dr. Partha Basu told Human Rights Watch:

The most frustrating thing about it [the lack of morphine] is a feeling of helplessness. As a doctor I have a responsibility to give comfort to my patient. In my heart I understand that I am not doing what I should be doing.[72]

Several doctors said that healthcare workers at institutions that do not have palliative care services frequently seek to avoid patients with severe pain and other symptoms. Dr. Durgaprasad of MNJ Institute of Oncology in Hyderabad said this was common at his hospital before it started offering palliative care:

We used some drugs ... For example, weak opioids like proxyvon or tramadol. But our patients’ pain was [often] much beyond [those medications]. So we tried to avoid the patients: “Don’t come to us. Go and take treatment at your local [doctor].” That was the attitude. “Our treatment is exhausted. We completed radiation, chemotherapy. We did everything we could for you. Nothing more is possible. You need not come here. You go and show to your local doctor.” The local doctor says, “This is not my specialty. Cancer is like a super-specialty. I don’t know anything about this cancer. So go back to your treating doctor.” So in between the patient suffers and they die with suffering. [73]

Dr. Sudha Sinha, a medical oncologist at MNJ Institute of Oncology who works mostly with pediatric cancer cases, told Human Rights Watch:

There is no data on pain in kids, on where children die, on whether children die in pain ... Until recently, I would send children who became incurable home, telling their families that no further treatment was possible. I had no idea what happened to these children...[74]

Delayed access to palliative care

Many patients described a long journey before they were able to access palliative care. This journey was often characterized by severe suffering and intense anguish as they dealt with healthcare institutions and doctors that were unable or unwilling to provide them proper treatment.

Kamala Kanwar, the woman from Rajasthan with cervical cancer, told Human Rights Watch that she had spent five months going around to different medical institutions. Her first stop was a local doctor in her home town of Bewar, who conducted some diagnostic tests, told her there was something wrong with her cervix, and referred her to a public hospital in Ajmer. Unhappy with her treatment there, she eventually went to a private gynecologist in Bewar who referred her to Bhagwan Mahaveer Cancer Centre in Jaipur. Kanwar said that during those five months she had experienced increasingly severe pain:

I developed severe pain all over the abdomen and in the area of my genitals. It was a continuous, throbbing pain that radiated to the back. It made me very irritable and frustrated. I went back to the doctor three or four times to say that I had pain and wasn’t getting any relief. I would get new medicines but they would still provide no relief.

She was unable to get adequate treatment until she arrived at Bhagwan Mahaveer Cancer Centre. When Human Rights Watch interviewed her, she said that she had 75 percent less pain than before.[75]

Many palliative care doctors told Human Rights Watch that the majority of their patients have a history of untreated pain. For example, the head of the medical oncology department at Bhagwan Mahaveer Cancer Centre told Human Rights Watch:

We see many patients who are referred from other hospitals. Many of these patients talk about suffering pain before being referred to us. Often, these patients will have a 10-page file with medical history without a single prescription for pain medications.[76]

 

Referral problems at hospitals with palliative care units

Our research found that even patients at hospitals that have palliative care units sometimes unnecessarily suffer from pain and other symptoms. Oncologists do not always refer patients with such symptoms to palliative care units while they are still undergoing curative treatment. Dr. Durgaprasad of MNJ Institute of Oncology explained, “Doctors associate palliative care with the end of life, so don’t see it as part of curative treatment.”[77]

Zahra Ahmed, a patient with metastatic breast cancer, told Human Rights Watch that she was only referred to the palliative care unit at MNJ Institute of Oncologythree months after presenting with a recurrence of her cancer:

I was given some medications for pain but I did not have complete relief. It was just temporary. Every time I complained the medications [were] changed. My pain would be better for three or four hours but then pain would come back. I couldn’t sleep because every time I turned I would be in severe pain.[78]

Only when she was eventually referred to the palliative care unit and put on morphine did she get relief.

Long distances to palliative care providers

We have a ridiculous situation: Oral morphine is so cheap but people have to pay 3,000 rupees [about US$60] for travel to get it.

—Dr. Gayatri Palat, MNJ Institute of Oncology[79]

Many patients who require palliative care live far away from the nearest provider. This is a consequence of both the dearth of palliative care providers in institutional settings and the absence of community-based palliative care in most parts of the country. It is also a key reason why many of the patients we interviewed were able to access these services only after long delays. Yet, palliative care and pain management services can be easily and cheaply provided at the local level, both through community-based programs and at primary health facilities and hospitals.

Most patients at tertiary cancer hospitals—specialized referral hospitals such as MNJ Institute of Oncology in Hyderabad or Bhagwan Mahaveer Cancer Centre in Jaipur—come from some distance from the towns in which these hospitals are located. It is not uncommon, for example, for patients of the palliative care unit at MNJ Institute of Oncology to have to travel nine hours to reach the hospital. While these palliative care units try to find ways to serve such patients—by providing a supply of oral morphine for two weeks or a month, allowing relatives to pick up medications, or supporting them with travel costs—comprehensive and effective palliative care and pain management cannot be provided. As Dr. Gayatri Palat told Human Rights Watch, “We cannot provide good terminal care. People go back to their villages to die.”[80] Dr. Anjum Khan Joad, of Bhagwan Mahaveer Cancer Centre, echoed this sentiment, saying,

We offer hospital-based palliative care. It is very difficult to maintain contact with people in villages. Often we don’t know what happens to patients. Some people will call and tell us the patient has died. About some others you read in the paper.[81]

For optimal delivery of palliative care to these patients, community-based programs are indispensable, as is availability of morphine at local hospitals and pharmacies.

Distances also pose a terrible dilemma for the patients. They have to choose between difficult travel to receive optimal care, sending relatives—often their only caregivers—to get medications, or getting no care at all. The cost of travel is a second dilemma. Patients and their families have often already incurred extensive debt paying for diagnostic tests and curative care. Even when the palliative care services and medications are offered free of charge, travel will drive them deeper into debt.

Various patients Human Rights Watch interviewed described the hardships of having to travel long distances to get access to palliative care and pain management. Muzaffar Iqbal, the lung cancer patient, lives in a town 500 kilometers from Hyderabad. Although his district town has a government hospital, it does not have morphine. He said:

 

It is difficult for me to have to come all the way here to get pain medications. I wish I could get them locally ... because of my leg pain I can’t drive my rickshaw anymore. I’m like a beggar. I have to ask neighbors for money and food. I have to ask people for money to make trips to pick up my medications.[82]

 

The exception: Immediate access to palliative care and pain treatment

A small minority of the patients we interviewed were able to access palliative care and pain treatment services almost immediately after developing pain symptoms or being diagnosed with a life-threatening condition. These patients had the good fortune, often because they lived in Kerala where palliative care is available in many communities, of being referred directly to an institution that offers palliative care, or developing a need for palliative care only after they were already in the care of such an institution.

One example is Ajai Jayakrishnan, a writer from Kerala with lung cancer. Jayakrishnan became ill in the second half of 2007. After a series of tests, he was referred to the regional cancer center in Trivandrum, where doctors removed one of his lungs and started him on chemotherapy. After several rounds of treatment, he began to develop pain symptoms. His doctor started him on painkillers, first weak opioids and later oral morphine.

His wife told Human Rights Watch:

We have had no delays in treatment. When my husband was in pain, I would call the doctor and he would give us a prescription. For the last few weeks, he’s been on oral morphine and generally has good relief.[83]

As his cancer progressed, a community-based palliative care group began to care for him at home, providing medication and counseling to him and his family. A Human Rights Watch researcher visited Jayakrishnan together with the palliative care team at his home in March 2008, where he was bedridden and increasingly weak.

The Causes of the Palliative Care and Pain Treatment Gap

The World Health Organization has urged countries to adopt national or state policies that support pain relief and palliative care; to enact educational programs for the public, healthcare personnel, regulators, and other relevant parties; and to modify laws and regulations to improve the availability and accessibility of drugs, especially opioid analgesics, noting that these measures “cost very little but can have a significant effect.”[84]

The WHO’s recommendations correspond closely with several core obligations—obligations that countries must meet regardless of resource availability—under the right to health. The Committee on Economic, Social and Cultural Rights, the body that monitors the implementation of the right to health as articulated in the International Covenant on Economic, Social and Cultural Rights (ICESCR),[85] has held that countries must adopt and implement a national public health strategy and plan of action and to ensure access to essential drugs as defined by the WHO.[86] It has identified providing appropriate training for health personnel as an obligation “of comparable priority.”[87]

Yet, the Indian government has performed poorly in each of these three areas. While it has, to its credit, recommended that states simplify regulations for medical morphine (the national Department of Revenue’s recommended “model rule”—see under “Drug Availability: The simplified procedure,” below) it has failed to enact meaningful policies around the development of palliative care services and has taken no steps to ensure education for healthcare workers or the public about palliative care. Most states and territories—with the notable exception of Kerala (see below)—have similarly failed to develop and enact palliative care policies, to ensure instruction of healthcare workers on palliative care, and, despite the recommendation from the central government to simplify drug regulations, two-thirds of India’s states and territories have yet to do so.

Beyond physical pain While physical pain is often the most immediate symptom patients with life-limiting diseases face—and the primary focus of this section—most also experience tremendous emotional, psychological, and spiritual pain. As M.G. Praveen, a palliative care volunteer with the Institute of Palliative Medicine in Kerala, said, “If someone comes to the clinic in physical pain, they first want to be out of physical pain. The second phase, they’re free of physical pain, but then comes the other pain–social, psychological.”[53] With a number of basic and inexpensive interventions, palliative care can often provide considerable relief of these symptoms. Many of the patients Human Rights Watch interviewed expressed deep anxiety and often shame related to their illness. As Harmala Gupta, the founder and president of CanSupport, a palliative care NGO in Delhi, and a cancer survivor, said, “When you need respect and empathy most, you are not treated as a human [but as a carrier of cancer]. You’re kicked around from one medical institution to the next, from one procedure to the next.”[54] In interviews, patients expressed deep fears about death and dying. For example, Sema, an 11-year-old girl from Andhra Pradesh with leukemia, told Human Rights Watch that she was afraid of what was going to happen to her. She said, “During my stay in Guntur [her home district] my parents constantly kept enquiring about the cause of the problem but the doctors never told us that it was cancer. They kept saying I would be operated on and that they [my parents] had to sign papers. I saw four or five other children die around me. I was very scared.”[55] M.G. Praveen told Human Rights Watch, “The first visit [to the patient’s home], we’re concerned about the pain or physical symptoms. But the second and third visit, they’re opening up their real pain. They don’t know what is going to happen and they want to know.”[56] Many patients expressed great anxiety about what would happen to their children once they were no longer around. A male patient told us he was concerned he would not be able to see his daughters married before he died.[57] A woman said she wanted to see her sons grow up and settle.[58] Patients routinely spoke of deep anxieties and feelings of guilt about finances. One man said, “I had bought a plot of land for my children. But I’ve had to sell it to pay for medical treatment. Now I have nothing to leave my children except debt.”[59] While the effects of psychosocial interventions are harder to measure than of pain management, various patients we interviewed told us how important that support from palliative care providers had been—or still was—for them. Mohammad, a 39-year-old man with multiple myeloma in Kerala, for example, told Human Rights Watch that the counseling he received from a palliative care provider “...gave me hope. I wanted to live... I have peace in my mind. One day I will surely die but there will be people to care for my children and my family.”[60]

Kerala: A Case Study Kerala provides an important example of what is possible in the Indian context. Kerala is the only state in India where palliative care services are available in every district, and many boast more than a dozen palliative care providers.[88] No other state or union territory in India comes close to Kerala’s coverage. A combination of an active civil society and a responsive government has made Kerala’s success possible. The development of palliative care in Kerala started in 1993 when the Pain and Palliative Care Society (PPCS) of Calicut, with limited support from the government, set up an outpatient clinic at the local medical college. Realizing that palliative care would remain inaccessible to the majority of the population if it was only offered in healthcare institutions, PPCS started exploring ways to bring palliative care into communities. It began training doctors, nurses and volunteers and encouraged them to set up link centers. The first such center was established in 1996. Since then, their number has grown rapidly. Volunteers in the communities have been the backbone of Kerala’s palliative care model. They plan and organize the provision of palliative care services, administer day-to-day activities, raise funds, attend to the social and financial needs of patients, and organize rehabilitation programs for patients and families. While civil society has been the driving force behind the development of palliative care, the government of Kerala has played an important role in facilitating that process. Kerala was one of the first states to amend drug regulations to make morphine readily available for palliative care providers. In 2008 Kerala became the first Indian state to adopt a state-level palliative care policy and to directly fund community-based palliative care programs. Yet, considerable challenges remain: More than half of Kerala’s population does not have adequate access to palliative care; palliative care remains inadequate or non-existent in most healthcare institutions; most medical professionals remain inadequately trained on palliative care; and procedures for healthcare providers to obtain injectable morphine remain unnecessarily complex.

Policy

Twice in the past 15 years, in 1996 and 2003, the Indian Ministry of Health and Family Welfare purchased large quantities of morphine—the last time for 10 million rupees (about US$200,000)—for regional cancer centers around the country, using money that had been provided by the World Health Organization.[89] Consumption of morphine in India had fallen to extreme lows in the preceding years—in 1997 India’s per capita consumption of morphine ranked 113th of 131 countries that reported statistics[90]—and the idea was that this purchase would help jumpstart the treatment of severe pain symptoms at India’s cancer hospitals. However, after the morphine was purchased it remained at the manufacturer for months; the majority of the regional cancer centers had not placed orders or refused taking any. When the manufacturer asked the government what it should do with the morphine, the government gave instructions to send it to Chittaranjan National Cancer Institute in Kolkata from where it was supposed to be distributed to other cancer hospitals. Again, most of the morphine remained unused as cancer hospitals showed no interest in obtaining any. Ultimately, government officials put a seal on the room where morphine was stored, apparently to prevent misuse, and prohibited anyone from using it. Most of the morphine remained unused and was disposed of after it expired.[91] A palliative care expert in India who studied these events told Human Rights Watch that most of the regional cancer centers did not ask for morphine—or even explicitly refused it—because doctors had not been trained in using the medication and because they needed to go through complex licensing procedures before being able to get the morphine.[92]

This failure demonstrates the importance of a coordinated and comprehensive approach to improving pain treatment—and palliative care more generally. While the Indian government purchased morphine, it had taken inadequate steps to ensure that healthcare workers were trained to use it properly or to remove regulatory barriers that impeded the movement of the morphine to different hospitals. As a result, a large amount of morphine went to waste while hundreds of thousands of cancer patients around India were suffering from severe, untreated pain.

Under the right to health, governments have an obligation to play a key role in putting in place a coordinated and comprehensive approach to palliative care services. In India, the central and most state governments have not played this kind of coordinating and facilitating role.

Central government

India does not have a national palliative care policy. Such a policy is particularly important because improving palliative care availability requires simultaneous steps by a range of different stakeholders, which, in India, include the Ministry of Health and Family Welfare, drugs controllers, the revenue department, hospital administrators, directorates for medical education, the Medical Council of India, and state governments. A national policy would help ensure that these stakeholders act in a coordinated fashion to improve availability of palliative care and pain treatment services, and would also raise the profile of palliative care and convey a sense of urgency to its development.

In 2005 the Ministry of Health and Family Welfare initiated a process that could have helped to partially fill this void. In the context of the development of the National Cancer Control Program (NCCP) for 2007-2011, it appointed a taskforce to formulate recommendations on palliative care that were to be included in the NCCP. While India’s national cancer control programs have made reference since 1987 to palliative care as a priority for cancer care, this rhetorical commitment has never been operationalized: no specific goals or funds were ever attached to it.

In April 2006 the taskforce presented its recommendations.[93] It proposed that a series of steps be taken to improve palliative care availability:

• Policy. The essential nature of palliative care was to be recognized in national and state policy by including such language into the National Cancer Control Program and striving to include it in state health policies.
• Palliative care service development. Palliative care provision was to be integrated into cancer care offered at all regional cancer centers and 100 other cancer centers over the course of the 2007-2011 NCCP.
• Opioid availability. Simplified narcotics regulations were to be introduced in all states and union territories over the course of the five-year plan, and uninterrupted availability of oral morphine was to be ensured at all regional cancer centers and cancer centers where palliative care facilities were to be started.
• Education and training. Training modules for doctors, nurses, social workers/counselors, and volunteers were to be developed; education was to be provided at regional cancer centers and other cancer hospitals; effective training in palliative care was to be ensured in all oncology postgraduate programs, including practical exposure; quality assessment tools were to be developed; and at least one nodal palliative care training center was to be established in each of India’s five geographical regional zones.
• Advocacy, awareness building, community participation. Peer support groups were to be developed for cancer patients and families; public awareness and community and NGO participation in palliative care was to be promoted.

 

Although the Ministry of Health and Family Welfare appointed the taskforce, it never formally responded to the recommendations. During the months that the taskforce worked on its recommendations, the official in the ministry who had appointed it left and his replacement announced at an April 2007 meeting organized by the American Cancer Society that palliative care would no longer be necessary in the future as India was about to launch a major cancer prevention and early detection campaign.[94] At the same meeting India’s minister of health told the meeting organized by the American Cancer Society that the total budget for the National Cancer Control Plan 2007-2011 would likely be 25 billion rupees (about US$500 million).[95] The taskforce had estimated the total cost of delivering its proposals over five years would be about 460 million rupees (just over $9 million), or less than $1 per cancer patient per year.

At this writing, the national cancer control plan for 2007-2011 has not been approved, so it  is unclear what the final budget will be, and how—if at all—palliative care has been included in the program.

The third phase of India’s National AIDS Control Program (NACP), India’s HIV/AIDS strategy, and a number of policy documents by the National AIDS Control Organization (NACO) make reference to palliative care. For example, NACO’s website states, in its section “Programme Priorities and Thrust Areas,” that “NACP-III also plans to invest in community care centres to provide psycho-social support, outreach services, referrals and palliative care.”[96] NACO’s guidelines for the response to HIV at the district level state:

 

The District Hospital will provide the full complement of preventive, supportive and curative services. It will provide the whole spectrum of HIV related “core and integrated services”: psycho-social counseling and support, ART, OI management as out- and in-patient, positive prevention services, TB, STI, specialized pediatric HIV care and treatment, palliative care and pain management as well as referral for specialist needs such as surgery, ENT and ophthalmology etc.[97]

However, these various documents do not provide any detail on how palliative care services are to be implemented in practice. Without a clear plan of action with benchmarks and timelines, these references are likely to remain just words.

One positive policy step, the inclusion by the Ministry of Health and Family Welfare of morphine—both oral and injectable—on India’s national essential medicines list, appears to have had little impact.[98]

State-level

Most state governments have played little or no role in the development of palliative care services. Where these services do exist, nongovernmental organizations have generally taken the initiative to develop them, with state governments playing a passive role. As has been mentioned above, the state of Kerala has been the exception.

In Rajasthan and West Bengal, state governments have done little to respond to the palliative care needs of the population. They have not adopted palliative care policies or even introduced the national Department of Revenue’s recommended “model rule” simplifying drug regulations (see below under “Drug Availability: The simplified procedure”). In Rajasthan, state government officials participated in a workshop in 2002 to discuss the reform of opioid regulations and appointed a taskforce to develop new regulations. But this taskforce never produced any result. Such a workshop was also held in West Bengal but regulations in the state remain unchanged.[99]

In August 2009 Andhra Pradesh became the fourteenth Indian state or union territory to introduce simplified drug regulations, making it far less complex for healthcare providers to obtain morphine.[100] However, Andhra Pradesh has not yet adopted a palliative care policy.

Human Rights Watch reviewed the essential medicines lists of Andhra Pradesh and Kerala. The former does not contain any opioid medications, including morphine.[101] The latter includes both weak and strong opioids. It stipulates that tablet morphine should be available at all levels of the healthcare system except at primary health centers.[102] A subsequent July 2009 order of the government of Kerala appears to indicate that morphine should become available at primary health centers as well: it states that “regular supply of all medicines needed for palliative care” must be ensured at such centers.[103] We were unable to find essential medicines lists for Rajasthan and West Bengal.

Education

In 1998, shortly after the central Department of Revenue requested states to change their drug regulations and enact a straightforward procedure for obtaining morphine, the state of Sikkim did so. Yet, though healthcare institutions in the state should now be able to get oral morphine relatively easily, the availability and use of the drug has not improved. Even today, more than 10 years after the new rule was introduced, the Indian Association of Palliative Care and Pallium India, two leading palliative care organizations in the country, are unaware of any palliative care providers in Sikkim, and medical professionals say that pain treatment remains unavailable to most patients who need it.[104]

The reason is simple: The government of Sikkim changed its regulations but it did not take steps to provide healthcare workers with training in palliative care and pain management. So morphine may have become less difficult to obtain but, without doctors who appreciate the importance of the medication, demand for it remains low and most hospitals simply do not order it. As a result, thousands of cancer and other patients in Sikkim continue to suffer unnecessarily from pain every year.

Human Rights Watch’s interviews in India with doctors who had received palliative care training underscored the importance of instruction. Several of these doctors said that the training had had enormous impact on their perceptions of palliative care and their ability to properly assess and treat patients. Conversely, these doctors said that without adequate training doctors are often unable to appreciate the importance of palliative care and pain management. Dr. M.R. Rajagopal, a veteran palliative care doctor from Kerala who has trained numerous medical doctors on palliative care, told Human Rights Watch:

Until they have received training, doctors do not understand that they are not providing good palliative care and pain management. They don’t see the pain. They do not understand the importance of morphine. They think they are offering appropriate care. They do not feel that there are many obstacles to palliative care and pain treatment.[105]

Dr Partha Basu, head of the gynecologic oncology department of Chittaranjan National Cancer Institute in Kolkata, echoed Dr Rajagopal’s sentiment, saying,

I come across a lot of patients in the terminal stage or who are suffering from cancer and need pain relief. Eighty percent come in at late stage. More than eighty percent [of patients] need some type of pain relief at some time in their life. Once I got trained in pain relief and palliative care, I realized the seriousness of the situation. Before I just tried with available [weak] analgesics... [106]

 

An oncologist from Chittaranjan National Cancer Institute in Kolkata, Dr. Prabeer Chaudhari, told Human Rights Watch that a six-week training he underwent with a leading Indian palliative care doctor in Hyderabad was an eye-opener. Although he had been a practicing radio oncologist for 25 years, it was during this training, he said, that he realized “the need to use opiates from the core of my heart.”[107] Another doctor, an anesthesiologist with 22 years of experience, said that palliative care training had “completely changed my perception about pain treatment.”[108]

Under the right to health, governments must take reasonable steps to ensure healthcare workers have appropriate training on palliative care and pain management. As an integral part of care and treatment for cancer and HIV, two key diseases in India, countries need to ensure that basic instruction on palliative and pain management is part of undergraduate medical studies, nursing school, and continuing medical education. Specialized instruction should be available for healthcare workers who pursue a specialization in oncology, HIV and AIDS, and other disciplines where knowledge of pain management and palliative care is a key part of care.[109]

Medical education in India

At present, the undergraduate curriculum for medical education does not include any specific instruction on palliative care or pain management. Indeed, even the WHO pain relief ladder, the fundamental tool for treating pain, is not taught in most medical colleges.[110]

Several palliative care doctors commented on the lack of instruction in medical college on palliative care and pain treatment. For example, Dr. Nidhi Patni, a radiation oncologist at Bhagwan Mahaveer Cancer Centre, told Human Rights Watch, “In medical college, I got zero exposure to pain management. In pharmacology, we got the basics on painkillers but that was it.”[111] She learned about palliative care during her postgraduate studies at Tata Hospital in Mumbai. A young oncologist from Delhi told Human Rights Watch: “In medical college, is there any discussion of pain management? Absolutely not. We do not get any exposure to the principles of palliative care.”[112]

In postgraduate education, instruction on, and exposure to, palliative care and pain management is extremely limited even for students who specialize in oncology or anesthesiology. This is a consequence of both the absence of formal training requirements in official curricula and the lack of palliative care units and pain clinics at teaching hospitals where postgraduates could be exposed to clinical practice.

Government agencies have not taken any proactive steps to ensure that instruction in palliative care and pain management is taught at medical colleges. Members of the Medical Council of India, which sets the curriculum for medical colleges, have told palliative care doctors that they believe that the current curriculum is flexible enough to allow medical colleges to introduce basic elements of palliative care and pain management to students. But the Council has not specifically recommended that medical colleges do so.[113]

Only a very small number of medical colleges in India—five out of a total of more than 300—have indeed done so. These medical colleges have incorporated instruction on palliative care in the course materials for community health and on pain management into anesthesiology.[114]

Similarly, only a small number of teaching hospitals provide clinical exposure to palliative care and pain management to postgraduate students. For example, as noted in chapter II, only 11 of 29 regional cancer centers—all of which are teaching hospitals—offer any form of palliative care or pain management. Thus, hundreds of oncologists, anesthesiologist, nurses, and other medical personnel in training do not receive any practical exposure to palliative care or pain management.

The absence of even basic steps to introduce palliative care into relevant curricula is a violation of the right to health.

Instruction for HIV/AIDS doctors

India’s National AIDS Control Organization is engaged in a massive effort to train hundreds of doctors and nurses on HIV care and treatment, as India rolls out antiretroviral treatment for the estimated 2.5 million Indians living with HIV and AIDS. It has trained doctors and nurses working at more than 200 ART centers[115] and 96 community care centers.[116]

However, to date, the training NACO has been providing for HIV/AIDS doctors has not included instruction on palliative care and pain management. While the curriculum includes instruction on issues like counseling that could also be part of palliative care, it is not taught in the broader framework of palliative care and does not include pain management. At a meeting with Human Rights Watch in February 2009, the deputy secretary general of NACO stated that he was open to starting training for AIDS doctors on pain management and palliative care.[117] Palliative care providers are currently engaging with NACO to introduce palliative care training for HIV/AIDS doctors.

Consequences of inadequate training

The lack of instruction for healthcare workers not only results in denial of treatment for patients, it also perpetuates problems with drug availability, as hospital administrators or pharmacists who do not understand the essential nature of morphine for the treatment of pain are less likely to ensure that the hospital pharmacies stock morphine.

Human Rights Watch came across several examples of this in our research. For example, a young anesthesiologist who had received his postgraduate training at a hospital with an active pain clinic told Human Rights Watch of the challenges he faced trying to convince his new employer, a private medical college, of the importance of providing palliative care services:

The biggest hindrance, I think, is that they [the hospital administration and fellow doctors] do not have any concept of palliative care and pain management ... If we want [to obtain a morphine license] we can get it. Though we can get it with difficulty, we can get it at last. [But] they have no idea.[118]

Drug Availability [119]

[When our hospital is unable to get morphine] we simply see them [patients] writhing in pain. We use non-opioids and weak opioids ... We can prescribe fentanyl patches. They cost 400 rupees [about US$8] for ... 72 hours. They’re available commercially. They’re out of reach for most of my patients, but

 

sometimes they have to buy them because people can’t be seen suffering so much.

—Dr. Sarkar, oncologist, Kolkata Medical College, discussing a period of more than a year when his hospital was unable to procure morphine[120]

Since 1985 the Indian government and state governments have enacted excessively burdensome regulations to prevent misuse of controlled substances. These regulations are a key reason why availability and accessibility of morphine and other opioid analgesics are poor in most of India. Although with the Department of Revenue’s 1998 model rule the Indian government has recommended a partial change to these rules, many states still operate under outdated rules that severely impede availability of morphine. Ironically, India is one of the largest producers of licit poppy and a supplier of morphine for much of the rest of the world.[121]

International law, specifically the 1961 Single Convention on Narcotic Drugs, requires that governments create a drug control system that both ensures the availability of opioids for medical purposes and prevents their illicit manufacture, trafficking, and use.[122] In India, the 1985 Narcotic Drugs and Psychotropic Substances Act (NDPS Act) created its national drug control framework. Under the Act,

the cultivation, production, manufacture, possession, sale, purchase, transportation, warehousing, consumption, inter-state movement, transshipment, and import and export of narcotic drugs and psychotropic substances is prohibited, except for medical or scientific purposes and in accordance with the terms and conditions of any license, permit or authorization given by the Government.[123]

Both the central government and state governments play a role in regulating opioid medications, with the states “empowered to permit and regulate possession and inter-state movement of ... the manufacture of medicinal opium.”[124]

After the adoption of the NDPS Act, medical use of morphine in India collapsed. In 1985, India consumed 573 kilograms of morphine; most of it was used in injectable form in hospitals to relieve post-operative pain.[125] Over the next decade, consumption of morphine dropped by 97 percent and reached a low of just 18 kilograms in 1997.[126] As Joranson, Rajagopal, and Gilson have pointed out, in that same period global consumption of morphine increased by 437 percent.[127]

Research into the sharp decline of morphine consumption in India by the WHO Collaborating Center for Policy and Communications in Cancer Care found that “the laws to control abuse of narcotic drugs interfered with making opioids available for medical and scientific purposes, and thus, were not balanced.”[128] It concluded that two major policy factors contributed to this lack of balance: First, the 10-year mandatory minimum prison term for violations involving narcotic drugs that the 1985 Act established led to pharmacies all over the country dropping morphine from their stock.[129] Secondly, states adopted complex narcotic rules following the 1985 Act, requiring (in Joranson, Rajagopal, and Gilson’s words) “import, import, export and transport licenses to ship any amount of morphine between any two states, as if they were countries.”[130] Most pharmacies stopped stocking morphine, and those that continued to do so began facing regular interruptions in supply due to the cumbersome procedures for procuring morphine.

By the late 1990s the Indian government recognized that the regulations introduced by the NDPS Act were impeding the legitimate use of an essential medication, and recommended that all states and territories adopt a new model rule that simplified the licensing and procurement system for oral morphine. However, under the NDPS Act, state governments are empowered to regulate the possession and movement of narcotic drugs and are therefore under no obligation to follow the recommendation of the national Department of Revenue. Morphine consumption has gradually gone up since the late 1990s, as palliative care advocates have trained healthcare workers, set up new palliative care programs, and some states introduced the model rule. But according to the Government Alkaloid and Opium Works, the sole government agency that distributes morphine domestically, India consumed 237.5 kilograms of morphine in 2008,[131] which is less than half the total consumed in 1985; this means that on a per capita basis, morphine consumption today is still just a quarter of 1985 levels.

Key problems with unamended state regulations: Multiple and complex licensing requirements

Unamended regulations in most states require medical institutions to obtain four or five different licenses before morphine or other opioid medications can be legally obtained and possessed. As a first step, medical institutions need to obtain a possession license, which permits them to stock morphine, along with a quota which specifies the maximum amount that the institution can possess during the validity period of the license.[132] Once the medical institution has obtained a possession license and quota, it can proceed with procurement of morphine. For each order, however, other licenses are or may be required: an import license; an export license to be obtained by the manufacturer if the latter is located in a different state from the procuring party; and, in some states, a transportation license.

The procedure for obtaining these various licenses is complex. It generally involves at least two different departments of state government: the department of excise (the equivalent of the revenue department on the national level) and the department of health. Under typical state regulations, applications are generally lodged with the district excise officer, who is entitled to “make enquiries as he deems necessary” while processing the application.[133] In practice, excise officers always seek the input and approval of the state drugs controller. At both the excise department and the drugs controller’s office, applications are generally reviewed at multiple levels. (The steps in the process for obtaining possession and procurement licences are mapped out in more detail in Appendix 1.)

Obtaining a possession license and quota

Various doctors and palliative care providers told Human Rights Watch of the difficulties they faced obtaining morphine licenses for their institutions. For example, a doctor at a medical college in a provincial town in northern India said in February 2009 that he had been trying to obtain such a license for his hospital for three months but had made little progress:

 

The local excise office does not know anything about morphine. They don’t know the procedure. So they have been dragging their feet. It took a long time for them to process the application I had submitted to obtain the license. They just sat on it ... When they finally did process it, they did so incorrectly and, as a result, I had to start everything again from scratch.[134]

A doctor in Kerala spoke of the difficulties he faced trying to get a license for injectable morphine for his hospital. He said that officials at the excise office had no idea how to process his request. Over the course of six months he unsuccessfully tried to learn the requirements for the application process, visiting and calling both the local and district excise offices. When he eventually just filed the application with the district excise office, he was told that he should apply with the local excise office. By that time he had left the hospital. As of July 2009, the hospital still did not have a possession license for injectable morphine, and the doctor was unsure whether the hospital was still actively pursuing one.[135]

Palliative care providers that are not affiliated with a hospital often face particular difficulties obtaining a possession license for morphine. Although state regulations generally do not preclude individual palliative care doctors from obtaining licenses for opioids, in practice excise officers and drug controllers have often required that palliative care providers be formally recognized as medical institutions before granting a license. For example, when Santanu Chakraborty, who runs the Ruma Abedona Hospice, a 14-bed hospice and community-based palliative care program in Kolkata, applied for a possession license in 2007, the West Bengal authorities told him to obtain a “clinical establishment” license before applying for the possession license. After waiting for more than six months—more than twice as long as the maximum period under the simplified narcotics rules recommended by the central government—his hospice was recognized as a clinical establishment in March 2008.[136]

CanSupport, an NGO in Delhi that has been providing home-based palliative care since 1997, faced major obstacles obtaining a possession license for morphine. The founder of the organization, Harmala Gupta, told Human Rights Watch that it took almost four years to finally secure the license.[137] Initially, the rules in Delhi required that in order to obtain a license for oral morphine CanSupport be registered either as a hospital or as a nursing home; the problem was that it was neither. A long stalemate ensued as the nursing homes superintendent did not know what to do with CanSupport. The breakthrough eventually came when a new principal secretary for health, a senior government official, in the Delhi union territory government, who had personal experience with cancer, took office. When CanSupport approached him and explained the problem, he initiated a meeting at which agreement was reached to amend the rules as per the recommendations of the Department of Revenue. With the new rules in place, the drugs controller recognized CanSupport as a registered medical institution and provided it with a possession license for oral morphine. Since then, CanSupport has treated more than 3,000 patients and relieved their pain with oral morphine.

While the system of allocating a quota with the possession licence is not unreasonable itself—provided that the quotas allotted are sufficient—it does create additional problems: Because obtaining import licenses, which are needed to procure more morphine, is such a complex procedure, medical institutions often wait until their morphine supply is very low before they place a new order. This way they can minimize the number of times they need to order morphine. The result of this practice is that there is little margin for error or delay in the procurement process before an institution will run out of morphine. A doctor at BP Poddar Hospital in Kolkata explained:

 The quota system is strict. Say you’re allowed to have 1,000 10 milligram tablets of oral morphine and have used 800. If you apply for more you’ll only get the missing tablets replaced. Hospitals will usually exhaust their supply before they reorder.[138]

Initial quotas may be relatively small because the medical institution has no past record of consumption that would help establish a reasonable quota. In order to change a quota, a healthcare institution has to go through the full procedure for obtaining a possession license.

Procuring morphine

Doctors and pharmacists also expressed frustration at the complexity of procedures for procuring morphine. They said that it can take many weeks or even months to obtain all the necessary licenses and to fill an order, and that any hiccups in the process can lead to interruptions in stock.

A pharmacist for a large private cancer hospital described to Human Rights Watch the numerous steps he has to take each time he places an order for morphine (see text box below for details). He said that while his pharmacy can generally obtain non-opioid medications within a few hours, it usually takes several months to get morphine. If anything goes wrong, it can take “up to five or six months.”[139]