Perspective
Painful Inequities — Palliative Care in Developing Countries
N Engl J Med 2012; 366:199-201January 19, 2012
- Article
When Artur, a former KGB agent in Ukraine, developed prostate cancer that metastasized to his bones, his pain grew so intense that he moved hours away from his family so they would not witness his suffering. “I don't want them to see me cry,” he said. Lacking access to the opioid regimens that we in the United States depend on to treat the pain accompanying end-stage prostate cancer, Artur turned to what he had available: a bottle of liquor and a gun beneath his pillow.
For 27-year-old Vlad, the temptation to take his own life was irresistible. Unable to stand the pain from his metastatic brain cancer, Vlad tried to throw himself out a window. He survived, only to live 2 more years with intractable pain.1
While the global burden of cancer and other noncommunicable diseases grows, lack of funding remains an impediment to the dissemination of effective treatment. But whereas patients like Artur and Vlad might be unable to gain access to high-quality cancer care, opioids are easy to produce and cheap. Morphine, the World Health Organization–sanctioned first-line treatment for severe pain, costs pennies per dose to manufacture. Yet 80% of the world's population, including more than 5 million patients with terminal cancer, lacks adequate access to pain treatment. In more than 150 countries, morphine is simply not available.2
“There isn't a single government that couldn't procure morphine if they wanted it,” says Meg O'Brien, who directs the Global Access to Pain Relief Initiative (GAPRI, a program of the Union for International Cancer Control and the American Cancer Society). “But no one is demanding it.”
Physicians' perceptions about palliation are at the root of the problem. Many physicians seem to believe that to discuss pain control is to admit defeat. This barrier is not unique to resource-poor countries. Even in the United States, whose palliative care movement has been under way for decades, many physicians were surprised when researchers showed that treating pain does not hasten death but, rather, prolongs survival.3
In many countries, physicians learn only about opiates' side effects, not their potential benefits, said Dr. M.R. Rajagopal, a palliative care physician in India. “Modern principles of pain relief and palliative care still aren't taught to medical students in 80% of the world,” he said, noting that many physicians in India finish training without ever seeing a morphine tablet.
Rajagopal recalled treating a patient with nasopharyngeal cancer whose pain was eventually controlled with morphine. The patient was also undergoing radiation therapy, and when his primary care doctor saw his morphine prescription, he tore it up, saying, “Never let me catch you with that again. That will destroy you.” Like many physicians, he feared opioid addiction and refused to believe that radiation alone was inadequate to treat the pain.
International drug laws, which effectively publicize the dangers of opioids, feed this fear of addiction. Drug trafficking is a highly visible crime, the subject of Hollywood movies. People dying in pain are generally invisible. Thus, although the International Narcotics Control Board recognizes the need to prevent drug trafficking while maintaining opioid availability for medical use, the reality has been far from balanced. International legislation focuses primarily on erecting barriers to illegal trafficking of heroin, rather than on removing the barriers that make its therapeutic counterpart, morphine, unavailable. As Diederik Lohman at Human Rights Watch noted, in some countries the rules are so stringent that physicians risk jail time if they prescribe opioids to treat their patients' pain.
This “collateral damage,” as Lohman refers to it, of the “war on drugs” has resulted in a formidable bureaucracy. Although regulations vary by country, the consequences are the same: physicians can't prescribe effective painkillers, and patients with pain can't get treated.
For instance, in the Mexican state of Jalisco, physicians must travel to the capital twice to acquire prescribing privileges — once for a license and again to secure their 50 allotted prescription forms. If they make it through this tangle, their patients must travel to the capital to fill prescriptions at one of the country's few pharmacies with a morphine license.
In Kerala, India, the opportunities for treating pain were similarly restricted until a few years ago. Physicians had to secure five licenses from different government bodies before they could prescribe a milligram of morphine. Often, one license expired before another was obtained, and the physician would have to start the process again without having administered a dose. In response to the efforts of Rajagopal, the palliative care physician, Kerala's rules have changed, but in most Indian states prohibitive hurdles remain (see table
Case Study Regarding the Prescribing of Narcotics: Difference between the Rules in a Typical Indian State and the Amended Rules in the State of Kerala.).4 In many countries, even if a physician is licensed to prescribe morphine, there are substantial impediments to administering the drug. In Ukraine, physicians are limited in both the amount of morphine they may prescribe and the route of administration. Vlad, for instance, the man with metastatic brain cancer, was allowed to receive only morphine injections, which had to be given by a health care provider in his home. Without a long-acting option, pain control is achieved infrequently at best; there are simply not enough trained personnel to reach all the patients in need.
In Uganda, because the bulk of the population lives in rural villages, most people die at home rather than in a hospital. Although there's been an active hospice program in Uganda for nearly two decades, rules specifying that only physicians may administer morphine initially limited the movement's reach. In response to coordinated efforts by international advocacy groups and in-country leaders, the Ugandan government changed the laws to allow nurses and other trained personnel to prescribe and administer morphine. But though Hospice Africa Uganda is now touted as the African model for palliative care, most people with pain at the end of life remain untreated, even in Uganda.
Although advocates in specific geographic pockets have succeeded in broadening access, some fundamental assumptions about poverty have kept this issue off the global health care agenda. As GAPRI's O'Brien notes, many people behave as if “poor people don't feel pain the way wealthy people do.” Poor patients who are in pain may be too sick and powerless to advocate for themselves — and once they've experienced unfathomable pain, they may no longer be alive to tell about it. Dependent on physicians to advocate for them, they are often left without a voice. “The medical world is closing its eyes to this enormous burden of pain and suffering,” says India's Rajagopal.
With the recent United Nations conference on noncommunicable disease, the world has opened its eyes to the growing burden of cancer. Closing the gap in cancer care will depend on marshaling limited resources toward disease-specific approaches to treatment and prevention. Pain, of course, has no pink ribbon and no celebrity survivor. But layering pain treatment onto any evolving health care system, no matter the disease, is as reachable a goal as any.
Disclosure forms provided by the authors are available with the full text of this article at NEJM.org.
Source Information
Drs. Lamas and Rosenbaum are editorial fellows at the Journal.
- References
References
1
International Reporting Program of the University of British Columbia's School of Journalism under the leadership of Peter Klein and in partnership with Al Jazeera English. Freedom from pain (video) (http://painpolicy.wordpress.com/freedom-from-pain/).
2
Statement of professor Sevil Atasoy, president of the International Narcotics Control Board, to the United Nations Economic and Social Council. July 30, 2009 (http://www.incb.org/documents/President_statements_09/2009_ECOSOC_Substantive_Session_published.pdf).
3
Temel JS ,Greer JA ,Muzikansky A , et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010;363:733-742
Full Text | Web of Science | Medline4
Rajagopal MR ,Joranson DE . India: opioid availability: an update. J Pain Symptom Manage 2007;33:615-622
CrossRef | Web of Science | Medline
- Citing Articles (2)
Citing Articles
1
Lukas Radbruch, Saskia Jünger, Aukje Mantel-Teeuwisse, Aaron Gilson, James Cleary, Sheila Payne, Willem Scholten. (2012) LETTER TO THE EDITOR. Journal of Pain and Palliative Care Pharmacotherapy120522102430009
CrossRef2
Ru-Rong Ji. (2012) Recent progress in understanding the mechanisms of pain and itch. Neuroscience Bulletin 28:2, 89-90
CrossRef
