Live in Fear or Die in Pain: access to pain relief for patients with cancer
According to latest statistics, 80% of patients with cancer throughout the world no not have access to pain relief- a basic human right. Aditi Das finds out more about this shocking situation
Pain is a phenomenon that unites us all. We are all familiar with the sting of a paper cut, the throbbing of a headache and the discomfort associated with a sore throat. Few of us however, have any concept of the reality of pain in its bare, intense and excruciating form. Chronic pain leaves you unable to work, sleep, wash or even eat. It strips you of your livelihood and renders you as a burden on society. Evidently, ‘true pain’ is not a phenomenon that unites us all.
In a recent report entitled ‘Access to Pain Relief-An Essential Human Right’ (1) Vanessa Adams, a palliative care pharmacist for the charity Help the Hospices, investigated the worldwide accessibility of pain relief for terminally ill patients. Her damning report suggests that 80% of cancer sufferers worldwide do not have sufficient access to analgesia. Furthermore, it revealed that around 7% of patients who suffer from pain secondary to cancer could be easily relieved, but are not. (1) Moreover, as the term “palliative care” encompasses not only cancer patients but also those suffering from other diseases such as HIV, AIDS, COPD and renal disease, the figures above are thought to reflect a gross underestimate of the availability of pain relief worldwide.
I was fortunate enough to be given a unique opportunity to interview Vanessa Adams following the release of her report. In addition, I was able to speak with Dr Yolanda Augustin, a Senior House Officer in Palliative Care who has a good working knowledge of pain.
Reasons behind lack of access
I began by asking Vanessa Adams about the reasons behind the global inequity in the access to analgesia. “The chief limiting factor in providing analgesics worldwide is not, contrary to popular belief, the cost of medications,” she began. “In Uganda for example, the cost of oral morphine to keep a cancer patient pain-free for two weeks is equivalent to the local price of a loaf of bread”. What’s more, morphine and codeine have featured heavily in the WHO’s Essential Medicines List for many years. (2) “So…?” began my next question, “given that opioids are renowned for being both inexpensive and effective, why are they not being adequately utilized?” “Important question!” was her response.
According to Vanessa Adams, “deprivation of pain relief is largely due to a lack of training and education of health professionals, policy makers and governments.” In Latin America and Asia for example, the percentage of health professionals deemed to have had no palliative care or pain control teaching in their undergraduate education program was cited as 82% and 71% respectively. Within these countries, it is reported that essential lessons such as how to diagnose pain, choosing which analgesics to use and in what dose, and how to minimize the side effects of opioids are sadly being omitted from the medical curriculum. As a result, scores of doctors are unaware as to how to safely administer analgesics to their patients.
Furthermore, “health professionals are reluctant to prescribe morphine in case their patient becomes dependent or addicted,” stated Vanessa Adams. According to WHO in the foreward to the report, such fears are “unfounded” and “the relation between drug abuse or drug dependence and licit medical use of controlled medicines is weak.” Therefore, there is an urgent need to address the issue of educating health professionals and to raise awareness of the gravity of pain.
In addition to a lack of education, access to pain relief is also severely limited by the paucity of research into its aetiology and management. “Palliative care is an underdeveloped field,” stated Dr Augustin. “It is not politically savvy to conduct research on terminally ill patients.” What’s more, “pain is an immensely subjective aspect of the scientific arena and symptoms are ignored because they cannot be quantified”. Thus in today’s society of ‘seeing is believing’ it is important that research is conducted into the pathology of pain, “More specifically, this way,” Dr Augustin added, “health professionals will understand the gravity of pain and in the future, will be less reticent to treat it.”
Interestingly, the WHO provides clinicians with clear instructions on how to prescribe analgesics safely via the WHO ladder (see table below the references). When used optimally, the WHO ladder has proven to be an effective method for relieving cancer pain in about 90% of patients. (3) “This is a simple tool that doctors can use without the fear of addiction,” stated Dr Augustin. “Therefore, if we have the treatment, yet deny patients of it, this is tantamount to torture.”
Barriers to accessibility
The report also highlighted other important barriers in accessing pain relief. “A pressing problem that needs addressing,” according to Vanessa Adams, “is the significant shortage of health care workers.” The Joint United Nations Programme on HIV/AIDS (UNAIDS), depicted palliative care as one of the most neglected aspects of health care. (4) Moreover, disparities in palliative care are further compounded by the political, legal and ethical issues surrounding morphine use. In many countries, stringent national laws, licenses and bureaucracy severely limit the delivery of analgesics to hospitals. In turn, pharmaceutical companies find little incentive in providing generic analgesics to hospitals in the marginalised areas of developing countries. Instead they focus their attention on non-generic drugs for large urban hospitals.
Calls for action
Evidently great leaps must be made in the field of pain relief. What Vanessa Adams’ report has demonstrated is that in order to widen access to pain relief we require the collaboration at the international and national tier in order to increase awareness, education, supply and access of drugs. In particular, each level of society, from the individual to the government, has a role to play in widening access to palliative care.
Governments, for one, are renowned for fuelling inequities in pain relief through their strict country policies. Such policies are set up to prevent misuse of drugs and effectively limit the amount of pain relief that regional hospitals can access. What is interesting is that in most cases, these very policies were created decades ago (well before the advancements in knowledge of pain relief) and are thus anachronistic, un-evidence based and inappropriate. Given today’s knowledge on the safety and efficacy of opioids, isn’t it about time that these detrimental national laws be revised?
Further, it is in the remit of the government to heighten the importance of ‘pain’ within the national health agenda. Most notably, pain should be an integral part of all national policies relating to cancer, HIV/AIDS and other chronic diseases.
Secondly, the role of drug companies in increasing the supply of drugs to marginalized regions is of fundamental significance. As cited in the report, “many pharmaceutical companies are not interested in manufacturing morphine or in obtaining a license for their formulation in countries where usage is thought to be low and bureaucracy potentially cumbersome.” (1) Evidently, drug companies within the developing world have a corporate responsibility to provide drugs to poorer areas, a role which they are currently evading in many parts of the world. A call for greater accountability of pharmaceutical companies is necessary.
Finally, it is the responsibility of health care professionals to eradicate their unfounded fears of drug dependence and abuse. Many countries have begun to embark on health policies to implement palliative care. Uganda in particular, has placed great emphasis on the role of advocacy in order to prioritise ‘palliative care’ in its political and health agendas. (5)
The existence of pain has underpinned our society throughout history. Archaeology has unearthed paintings and remnants that illustrate man’s endurance of pain since the prehistoric era. However, what distinguishes modern day suffering is that it is needless and inhumane, given the availability of inexpensive and effective analgesics. Pain has far reaching implications including dependence, stigma and poverty. It is the fear of abandonment and dying in pain that is incited in every patient who is diagnosed with a terminal condition.
Dr Augustin likened the lack of access to pain relief to the HIV epidemic of the early 1980s. “The importance of pain relief is comparable to, if not greater than, that of anti-retrovirals.” She added, “the resolve of the HIV epidemic is testimony to the fact that when there is sufficient scientific will, change can ensue.” We can no longer go on allowing terminally ill patients across the globe the choice of two options: to live in fear or to die in pain.
Aditi Das
Fourth year medical student (Manchester University) intercalating in a BSc in international health
Child Health Institute
University College London
London
aditi_d@yahoo.com
(1) Access to Pain Relief- An Essential Human Right. http://www.worldday.org/documents/access_to_pain_relief.pdf
(2)WHO. WHO Model List of Essential Medicines. http://www.who.int/medicines/publications/EML15.pdf
(3)WHO. Palliative care. http://www.who.int/cancer/palliative/en/
(4)UNAIDS. Palliative care. http://www.unaids.org/en/Issues/Prevention_treatment/palliative_care.asp
(5) Jagwe J, Merriman A. Uganda: Delivering analgesia in rural Africa: Opioid availability and nurse prescribing. J Pain & Symptom Management 2007; 33(5): 547-551
Table: pain ladder*
If pain occurs, there should be prompt oral administration of drugs in the following order:
Step 1: Aspirin or paracetamol.
Step 2: Codeine or dihydrocodeine, with or without non-steroidal or anti-inflammatory drugs such as ibuprofen or indomethacin.
Step 3: Morphine, with or without co-analgesia, and with or without steroid anti-inflammatory drugs. Other strong opioid analgesics include pethidine and fentanyl.
*Modified from WHO pain ladder: http://www.who.int/cancer/palliative/painladder/en/