Cancer pain is not a fatality – as long as patients don’t reject the remedy.
by Dr Gouri Shankar Bhattacharyya
Throughout Asia, 75 percent of cancer patients suffer from advanced cancers. Pain is a daily burden for almost 90 percent of them. Opioid analgesics are critical to effectively managing this cancer pain, yet prescription and consumption levels remain worryingly low across the continent. In 2015, average consumption in the World Health Organisation’s (WHO) South-East Asia region was just one hundredth of that in the WHO European region.1
According to Prof. Nathan Cherny, co-author of the Global Opioid Policy Initiative (GOPI) Research Study2 published in 2013, “The undertreatment of severe and chronic cancer pain is a global health crisis with far-reaching consequences for patients and their families – including poor quality of life, depression and even shortened survival.” The GOPI was spearheaded by the European Society for Medical Oncology (ESMO) as part of its commitment to palliative and supportive care, a critical part of the patient journey. This worldwide research study contributed hugely to our understanding of the structural and regulatory barriers to opioid use that exist in individual Asian countries. However, we are just beginning to gain detailed insights into the patient-side misconceptions and concerns that hinder adequate pain relief through opioids.
Before looking at the latest research in this field, let’s make sure we understand what opioids are, and why they are integral to cancer care.
The Power of the Poppy Seed
Opioids are a group of analgesic drugs traditionally derived from poppy seeds. The sedative properties of the poppy seed were already known in antiquity, but the term “opioid” was only coined in the 1950s to refer to the modern medications produced from isolated alkaloids found inside the seedpod: morphine and codeine. Derivatives of these include hydromorphone, buprenorphine, and synthetic or semi-synthetic forms of morphine.
Opioids are mainly used to relieve severe pain, but can also be employed for anaesthesia, controlling diarrhoea and suppressing coughs. For example, lung cancer patients may take codeine syrup to treat respiratory symptoms.
In advanced cancer patients, the main goals of treatment are to prolong survival and improve quality of life, which begins with achieving a good control of symptoms. Since metastases to the bones, nerves or other areas of the body can cause very severe, sometimes chronic pain, effective symptom control without opioids is often impossible.
Asian Patients and Opioids: A Mixed Bag of Fear and Confusion
There are many factors causing cancer patients to forgo treatment with opioids throughout Asia, including shortages or non-availability of the drugs, as well as considerable legal restrictions on prescription and use.3 Even in countries where opioids are widely available and restrictions to access are lower, barriers to their use still exist at the social and individual level.
One of the most common fears that patients have about taking morphine is that it can lead to respiratory distress and death.4 This is a myth: clinically significant respiratory distress is an extremely rare occurrence.
An equally widespread fear is that opioids cause addiction. Here, understanding the difference between addiction and physical dependence is key. Addicts continue to use a drug even if it is harming them, and its administration is no longer medically controlled. Physical dependence is a state of adaptation to medication where patients may show withdrawal symptoms if morphine is abruptly discontinued, but have no problems if it is tapered off gradually.
The idea that pain is an inevitable part of living with cancer seems to be particularly prevalent in Asia. Strikingly, in a 2012 meta-analysis of differences between Western and Asian cancer patients’ attitudes towards pain management, a majority of Asian patients reported suffering from moderate to severe pain for more than 12 months but still rated their pain medication as effective and satisfactory.5 The belief that pain is indicative of the disease progressing, though false, was also found to be among their main concerns.
Untangling the Net of Religious, Ethnic and Cultural Diversity
The most common fears about opioids tend to be conflations with the known risks of drug abuse. While it is true that respiratory depression is the main cause of death among drug addicts, use of medically controlled morphine seldom cause adverse events and even more rarely progresses to death. As for addiction, the history of the Opium Wars in China and the endemic addiction problems at their root have left a durable mark on collective memory throughout Asia.
General beliefs about pain are also closely connected to the region’s cultures and religions. The continent’s two main religious groups, Buddhists and Jains, have learned through their respective doctrines that tolerance to pain is necessary, because it is a gift from God. In various communities, pain and opioid use additionally come with a certain level of social stigma.6
Adding Local Insight to General Knowledge
A new piece of research, presented during the fourth edition of the ESMO Asia 2018 Congress last November in Singapore, has explored the prevalence of barriers to opioid use among the communities represented by cancer patients at Sarawak General Hospital in Kuching, Malaysia.7
The single-institution study measured the pain intensity of 133 patients with solid tumours across all stages of disease and treated with opioids. Participants rated their pain in the week preceding the survey using a visual analogue scale (VAS) from 0 to 10, and self-assessed the impact pain had on their daily activities via the Brief Pain Inventory short form (BPI-sf). Data was collected on the types of opioids taken, and the Barriers Questionnaire-II (BQ-II) was used to assess patient-related barriers to taking this type of medication. Social determinants including ethnic group, religion and education level were also recorded in the survey and used to assess the results. All participants completed all questionnaires, without any missing data.
“Malaysia is an ethnically and culturally diverse country. On the island of Borneo, where our cancer centre is located, the three largest ethnic groups are Malay, Chinese and the native Dayak people,” said study co-author Dr. Voon Pei Jye. “This was reflected in the demographics of our patient cohort, which included 38 percent of Malay, 36 percent of Chinese and 26 percent of Dayak respondents.”
The drugs used included morphine, oxycodone and fentanyl, as well as the weaker opioids codeine and tramadol. Overall, 62 percent of participants reported having adequate pain control, rating their pain as mild with a VAS score between 0 and 4. “Pain was reduced by more than half in almost 84 percent of patients taking strong opioids, which confirms the effectiveness of these medications,” said Voon. “Interestingly, despite the majority reporting low pain levels, 71 percent had moderate to severe interference of pain in their daily activities.”
This discrepancy could indicate that patients actually did not have holistic total pain management. The basal physical element of pain was well controlled, but its psychological, social and spiritual components also have the potential to disrupt people’s daily lives.
“The most common fear we observed, among 40 percent of participants, was that strong opioids could damage the immune system. This is a big misconception: there is no evidence to suggest opioids burden immune function,” Voon explained. “Concerns about tolerance and addiction were also widespread (27.8%), followed by the belief that pain could mask the monitoring of cancer progression (23.3%), perceived difficulties in managing the side-effects of opioids (18.05%) and complaints that pain could distract doctors from treating cancer (16.5%).”
The fatalistic belief, which is common in many Asian cultures, that advanced cancer inevitably comes with pain, was observed in seven patients. “This is consistent with results from previous studies,” said Voon. “We also had 15 participants who did not want to trouble their doctor with secondary complaints, which is typical of the desire to be a ‘good patient’.” These two cultural barriers are particularly damaging, because in both cases patients are likely to withhold information from their physicians entirely.
Mean barrier scores were calculated for each participant and then aggregated by ethnicity. The Chinese and Malay groups displayed similar results. However, statistically significant differences were observed with the Dayak patients. “In absolute terms, barriers to opioid use were highest among Malay, then Chinese patients, and notably lower among the Dayak,” Voon explained.
“We think that Dayak patients, who came from rural communities and had to travel long distances to the city for their appointments, may have been more sensitive to the need to comply with their doctors’ recommendations,” he continued. “Social media, and the profusion of false information about opioids that is circulated there, may have played a role in the perceptions of our mostly urban Chinese and Malay participants. Of course, these are just postulations.”
Education level was also a differentiating factor in the study: the results showed that in this patient sample, more formal education was associated with higher barrier scores. Participants who had completed tertiary education had a total mean score more than twice as high as the groups with no, or only primary, education. This crucial finding proves that general literacy and education do not go hand in hand with health literacy.
What Should We Do Now?
The sample size of this study was insufficient to draw conclusions or extrapolate the results beyond Sarawak General Hospital. The question of whether all survey participants – in particular those who had no formal education at all – had the ability to complete the required questionnaires autonomously and competently, also remains open. Nonetheless, this is an important piece of research that should be duplicated in the rest of Malaysia and in every country throughout the Asian region, where this kind of data continues to be scarce.
To tackle the issue of patient-related barriers to pain relief with opioids, the cancer and palliative care organisations working in the region should collaborate to drive health education and literacy in Asia – for patients and the wider public, as well as for doctors, nurses and other caregivers who play a role in pain management. Initiatives such as the ESMO GOPI play a key role in shedding light on issues that would otherwise be overlooked due to prevailing misconceptions, and they will need continued, active support to effect the change that patients in many countries so sorely need. Cancer pain is not a fatality – we just need to paint a better picture of the remedy. [APBN]
- Vallath N, Rajagopal M R, Perera S, Khan F, Paudel BD, Tisocki K. Access to pain relief and essential opioids in the WHO South-East Asia Region: challenges in implementing drug reforms. WHO South-East Asia Journal of Public Health 2018, 7:67-72, https://doi.org/10.4103/2224-3151.239416
- N. I. Cherny, J. Cleary, W. Scholten, L. Radbruch, J. Torode; The Global Opioid Policy Initiative (GOPI) project to evaluate the availability and accessibility of opioids for the management of cancer pain in Africa, Asia, Latin America and the Caribbean, and the Middle East: introduction and methodology, Annals of Oncology, Volume 24, Issue suppl_11, 1 December 2013, Pages xi7–xi13, https://doi.org/10.1093/annonc/mdt498
- J. Cleary, L. Radbruch, J. Torode, N. I. Cherny; Formulary availability and regulatory barriers to accessibility of opioids for cancer pain in Asia: a report from the Global Opioid Policy Initiative (GOPI), Annals of Oncology, Volume 24, Issue suppl_11, 1 December 2013, Pages xi24–xi32, https://doi.org/10.1093/annonc/mdt500
- Lye MunThoa, Maria Minerva, P. Calimag, Jin Seok Ahn, Ta-Chung Chao, Kok-Yuen Hoe, Yong-Chul Kim, Zhong-Jun Xia, Lois Ward, Hanlim Moon; Patients’ perspectives on the current status of cancer pain management in Asia. European Journal of Cancer, Volume 51, Supplement 2, July 2015, Pages e33-e34, https://doi.org/10.1016/j.ejca.2015.06.098
- Chen C H, Tang S T, Chen C H; Meta-analysis of cultural differences in Western and Asian patient-perceived barriers to managing cancer pain. Palliative Medicine 2012, 26(3), 206–221, https://doi.org/10.1177/0269216311402711
- Francis O Javier, Cosphiadi Irawan, Marzida Binti Mansor, Wimonrat Sriraj, Kian Hian Tan, Dang Huy Quoc Thinh; Cancer Pain Management Insights and Reality in Southeast Asia: Expert Perspectives From Six Countries. Journal of Global Oncology 2016, 2(4), 235–243. https://doi.org/10.1200/JGO.2015.001859
- D Z F Lee, D K L Kiu, V Pei Jye; Pain control among cancer patients receiving strong opioids and their perspective towards opioids in a developing country with a diverse multicultural background. Annals of Oncology 2018, Volume 29, Issue suppl_9, 1. https://doi.org/10.1093/annonc/mdy444.019
About the Author
Dr. Gouri Shankar Bhattacharyya is a consultant at the department of medical oncology at Salt Lake City Medical Centre in Kolkata, India. He is a member of the ESMO Global Policy Committee.