Despite Growing Awareness, the Global Crisis of Untreated Cancer Pain Persists

A Conversation With Virginia LeBaron, PhD, APRN


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Virginia LeBaron, PhD, APRN

Cancer is a complex global problem, but there’s a simple solution to alleviating much suffering: access to morphine.

—Virginia LeBaron, PhD, APRN

Each day, millions of patients with cancer around the world suffer unrelieved pain because they are denied morphine, the gold standard of cancer pain control. The World Health Organization has called access to morphine a human rights issue. Not surprisingly, the crisis in unrelieved cancer pain is a tale of two worlds: most suffering due to a lack of morphine is felt in the world’s poorer regions. Challenges related to opioid availability affect many low- and middle-income countries, such as India, which has an astounding one-seventh of the world’s population. Despite having a robust pharmaceutical industry and being the world’s largest producer of medical grade opium, the majority of India’s cancer patients die in pain.

To better understand this issue, The ASCO Post recently spoke with Virginia LeBaron, PhD, APRN, Postdoctoral Research Fellow at Dana-Farber Cancer Institute. Dr. LeBaron has done extensive research into barriers to pain control in resource-challenged areas, most recently in India, where she led a study looking at barriers to opioid availability and cancer pain management.1,2

Barriers to Pain Management

Please tell the readers a bit about your background and what led to your interest in barriers to pain management.

My clinical and research background is in oncology palliative care and my interest in barriers to pain management has evolved from my collective experiences as a clinician, nurse faculty member, and as a researcher. I began my oncology nursing career as a chemotherapy infusion nurse, caring for very sick patients with advanced cancer. Early on, I struggled with whether we were really managing their pain as well as we could. I later went on to graduate school and became a nurse practitioner, focusing specifically on oncology palliative care. I worked with excellent mentors and learned how to properly assess and manage pain.

While working as an oncology nurse practitioner, I had a series of fortuitous connections that put me in touch with a non-governmental organization, called The International Network for Cancer Treatment and Research (INCTR). In 2004, this group was looking for a palliative care nurse to assist with a project in Nepal. I volunteered and it was on that first trip when I truly witnessed what cancer was like without pain control.

I will never forget a visit to a pediatric hospital ward, seeing children with advanced cancer who were in agony because they had no opioids; only acetaminophen was available to treat their severe cancer pain. That experience affected me deeply. I returned home determined to figure out how we could improve that terrible situation of untreated cancer pain. There are lots of problems in the world without clear solutions, but in this situation, we have morphine, an inexpensive medication that would relieve this unnecessary suffering.

Back in the States, my unanswered questions about barriers to pain control led me to return to school for my doctorate degree in oncology nursing, and ultimately to India as a Fulbright Fellow to conduct my dissertation research.

Cultural Immersion

Please describe the goals and design of your study and any of its limitations.

The design of my research project was an ethnography, which is a qualitative research method that has its roots in anthropology and involves intensive cultural immersion to try to most comprehensively understand a certain phenomenon. I lived in India for 9 months collecting data for my project. Ethnography generally involves three key data sources. First, participant observation is necessary, and for that I spent hundreds of hours in the field site, which was a 300-bed government cancer hospital. I interacted and spent time with nurses, physicians, social workers, pharmacists, and patients and their family members to learn about how they approached and understood cancer pain management.

My second key data source included 54 semistructured interviews that were more formal audio-recorded conversations to further explore cancer pain management. And my third source was derived from examining various hospital documents related to pain management.

The goal of the study was to explore cancer pain management in a resource-constrained setting, particularly from the nurse’s perspective in order to understand how limited access to opioids affected their practice. All research projects have certain limitations; barriers related to language and translation were a primary limitation, although I utilized a translator who was fluent in the local language in the field during my entire project.  Some may also wonder about generalizability, but I would suggest, based on published results from similar projects and in conversations with other global health experts that the key findings from my research are applicable beyond India, particularly to government hospitals in other low- and middle-income countries.

Perceptions and Biases

According to your work, what are the greatest barriers to morphine access in India?

This is a complex problem. A combination of factors impede access to morphine for cancer pain in many low- and middle-income countries, such as India. The barriers broadly fall into the categories of policy, education, regulatory issues, and cultural considerations and biases. For example, in the hospital where I did my research, general ward nurses did not administer morphine; it was not something they were trained to do. And I also found that when nurses did advocate for their patients, many physicians were reluctant to order morphine, even if it was available.

There was also at tmes a cultural belief that pain was an inevitable and untreatable byproduct of cancer; witnessing cancer patients in severe pain seemed to reinforce this mindset. I was in a city of 8 million people, and the 300-bed hospital where I conducted my research was the only institution that had relatively reliable access to adequate amounts of morphine.  But even there, morphine stock-outs still occurred.

And more broadly, many developing countries lack national health policies that address pain and palliative care. In many low- and middle-income countries, regulations are very unbalanced and focus more on preventing the illicit use of opioids at the expense of ensuring that these essential medications are available to patients who desperately need them.

Important Misperceptions

False perceptions about morphine use among the lay pubic and regulatory agencies have been identified as an impediment to its use. Did you and your colleagues find this perception barrier among health-care professionals?

Yes. Unfortunately, there are serious misperceptions about morphine, not just in India, but also throughout much of the world. A large part of this relates to disproportionate fears of addiction when morphine is used to treat pain. 

There’s also a misperception by many that once opioids are introduced into care, it means the patient is imminently dying, when, in fact, studies show that early, effective, and appropriate pain management intervention not only enhances quality of life, but can improve survival outcomes as well.

Narcotic Drugs and Psychotropic Substances Act

What are the first critical steps in breaking down the barriers to access to morphine in India?

This past February, India took a major step forward when the parliament approved amendments to the Narcotic Drugs and Psychotropic Substances Act, which eliminated archaic rules that obligated hospitals and pharmacies to obtain four or five licenses, each from a different government agency, every time they needed to purchase pain medications. Another critical step is to develop educational programs that address cultural barriers related to using opioids to manage pain, and to ensure that basic palliative care instruction is integrated into nursing and medical school curricula.

Equally important is to ensure that morphine is available throughout India, as there are many rural areas where access to pain relief is completely absent. Many patients and family members struggle to travel to city hospitals, such as the one where I conducted my research.

We, as a health-care community, must find a way to decrease the disparity of access to pain relief and palliative care services that impacts so many patients in need around the world. This is especially critical as the global cancer burden disproportionately affects low- and middle-income countries. Cancer is a complex global problem, but there’s a simple solution to alleviating much of its suffering: access to morphine. ■

Disclosure: Dr. LeBaron reported no potential conflicts of interest.

References

1. LeBaron V, Beck S, Black F, et al: Nurse moral distress and cancer pain management: An ethnography of oncology nurses in India. Cancer Nurs 37:331-344, 2014.

2. LeBaron V, Beck S, Black F, et al: An ethnographic study of barriers to cancer pain management and opioid availability in India. Oncologist 19:515-522, 2014.



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