- BIOETHICS FORUM ESSAY
The Price of Pain
Imagine facing the severe pain of advanced cancer without so much as an aspirin to ease your suffering. Perhaps the knowledge that you’re not alone might help you bear the agony. In fact, according to our report Access to Pain Relief – An Essential Human Right (pdf), published this week to mark World Hospice and Palliative Care Day on 6th October, 80% of the world’s cancer sufferers have no access to pain relief. This, in turn, means that 7% of everyone in the world today is experiencing cancer pain that could be relieved but isn’t due to lack of access to pain relieving drugs that are low cost, easy to administer, highly effective and identified by the World Health Organization (which drafted the introduction to the report) as essential medicines.
Of course the problem extends way beyond cancer. The report also looks at the incidence of pain and the availability of analgesics with reference to other advanced and terminal diseases, including AIDS, heart disease, chronic obstructive pulmonary disease, and renal disease. It showcases the findings of a new survey conducted among 69 hospice and palliative care services in Asia, Africa, and Latin America, as well as drawing together disparate sources of information about the state of access to pain relief globally.
Given that the survey respondents are all actively involved in providing palliative care, and that the vast majority of people living in the surveyed countries do not have access to those services or to palliative care of any kind (in India, for example, less than 1% of people needing palliative care have access to it), the findings are particularly disturbing. After all, if health care workers wanting to provide palliative care cannot access the required analgesics, it is highly unlikely that these drugs will be available to any other health workers in that country or state.
The survey shows, among other things, that 25% of palliative care providers in Asia, 35% in Latin America, and 39% in Africa cannot always access a strong opioid. Over 20% of African respondents declared they never have access to strong opioids. Only 55% of respondents have a weak opioid “always available,” while 22% have access only “occasionally” or “never.” One main hospital in Malawi reported that aspirin is the only pain killer which is “always available,” and as this is not recommended in children, there are no suitable pain killers available for children at all.
It should be noted that money is not the main barrier to pain relief access. Morphine is not an expensive medicine; in Uganda it costs the same to keep a cancer patient pain-free for two weeks as it does to buy a loaf of bread.
In fact, while poorly developed health systems are an important factor, the key culprits are lack of education and training resulting in misinformation and misplaced fear and the belief that there is nothing that can be done to relieve pain. All too often policy-makers – and even doctors themselves – mistakenly believe that the use of strong opioids such as oral morphine leads to addiction, abuse, and unwelcome side effects. In fact, if prescribed correctly, they are as safe as paracetamol. Side effects are known, predictable, and preventable, and studies show that addiction is extremely rare when opioids are used for pain relief.
Yet the fears persist and lead in turn to excessively strict legislation and bureaucracy preventing medics accessing opioid analgesics. One survey respondent commented, “[There is] fear at all levels of using opioids even when they are available, including among specialist doctors.” Another remarked, “In my ten years’ experience I have never seen a doctor suggest or prescribe opioids other than for cancer patients, and they dismiss out of hand suggestions to consider it for end term AIDS patients, or end stage patients with severe respiratory distress.”
Perhaps this resistance should come as no surprise. After all, the survey also showed that professional training for 71% of palliative care workers in Asia and 82% in Latin America does not include either pain relief or opioids.
In order to stop millions suffering pain needlessly, coordinated international and national programs are urgently needed to increase awareness, education, supply, and access. Palliative care and access to analgesics should be integral parts of all national policies relating to cancer, HIV/AIDS, and other chronic diseases. This is particularly important in resource-poor settings where pain incidence is often highest and where so many patients are beyond cure by the time they present for treatment. Yet the majority of people denied access to pain relief are in developing countries. Health care programs in these regions often focus on preventative measures and curative treatments at the expense of palliative care. This is particularly true in the AIDS arena. However, it should be borne in mind that the availability of antiretroviral therapy for HIV patients does not decrease their need for pain relief, and that palliative care can improve adherence to treatment.
As the title of our report declares, pain relief is an essential human right. Pain decreases the ability of a patient, their friends, and family to sleep, carry out everyday activities, work, communicate, concentrate, resolve conflict, and address practical issues that, if thought through, allow peace of mind as the end of life approaches. Rather than being swayed by fear and misunderstanding, perhaps health-care workers and policy-makers should ask themselves whether failing to relieve pain isn’t in fact the greatest of all negligences.
Access to pain relief – an essential human right is available to download free of charge at http://www.worldday.org/documents/access_to_pain_relief.pdf.
David Praill is chief executive of Help the Hospices.