The second day of the Association of Palliative Medicine’s conference focused on complex pain and its management.
The morning plenary featured Professor Irene Tracey, Head of the Nuffield Department of Clinical Neurosciences at the University of Oxford, giving a talk on how the brain perceives and modulates chronic pain, as well as how the use of advanced neuroimaging has made it possible to find out what factors make pain worse.
Pain has been classified as a disease in its own right by the International Classification of Diseases (ICD), she explained. One in five people suffer from chronic pain, along with comorbid anxiety, depression, and resultant job loss, and it is one of the biggest medical problems in the developed world.
It is subjective and there are very poor tools to understand it – medics are resigned to observing patients or monitoring indirect heart rate changes, particularly in patients with dementia, this subjectivity leads to legal issues. “You absolutely cannot make an inference based on what you see, Irene says. “Pain is multidimensional, malleable and subject to mood. Anxiety, depression catastrophizing and attention span change the experience of injury.”
Bias and beliefs also have an influence on how pain is perceived. From a young age boys are bombarded with the concept of being rewarded for pain, religion has a pain-reward principle, and women are told that a painful childbirth is a good thing.
Not treating comorbid issues is not treating the injury, Irene explained. To prove this advanced neuroimaging experiments looked at the chemicals and activity on the brains of people while they were experiencing pain. Doctors experimented with patients’ moods, by playing them the Funeral March at half speed and giving them grim statements to read such as “I am a failure”, before administering painful electric shocks. They found the pain was worse in people whose mood was low.
Risk factors for chronic pain are being female, being older, and adverse life effects. Studies have found that some people are wired in such a way their symptoms will always turn into suffering.
In another series of experiments the painkiller remifentanil was administered to patients, but they were told they were receiving a much smaller amount, or were not told until much later that it was being given. The results showed that people’s experience of pain depended on what they were told and not the quantity of medication they were given. Studies like this are hugely important, Irene explained, because not having this knowledge can lead to withdrawing useful drugs.
Dr Kathryn Mannix, author of With the End in Mind, gave a talk on the need to normalise death and dying. She began by recounting the story of a 90-year-old patient of hers with “27 commorbidities”, who at the point of dying had no advance care plan and his sons had no idea what his wishes were, because they had refused to discuss them with him. “This is a public health problem” Kathryn said, “we need to do something about the public understanding of dying. We need better plots in EastEnders, and to smack the Daily Mail.”
In 2016 Kathryn was invited to take part in a BBC Radio 4 show with comedian David Schneider, where she talked about the process of dying. The response from the public was so positive that a literary agent got in touch, and her first book – now a Sunday Times bestseller – was born.
Now retired from her role as a palliative consultant she is devoting her time to raise awareness of what normal dying looks like.
“Birth is planned for and narrated throughout, with midwives saying things like “you’re doing great” and “this is normal”. Death must be narrated too, to help the bereaved family” she said.
She explained that while everyone’s experience of birth and death is unique, medical professionals have seen it all before and know what to expect. It is therefore up to them to explain the normal signs to family members: the loss of energy, more need for sleep, less appetite and thirst, drifting in and out of consciousness without realising.
“How do we enable change?” she asked. “We need leadership and political will more than money. We need stories more than data, swapped in pubs, cinemas, and synagogues, and from all directions, until normal dying is what everyone understands and nobody remembers how they first heard about it.”
The opioid crisis and problems with their long-term use was covered in a talk by Dr Cathy Stannard, consultant in Pain Medicine at Southmead Hospital in Bristol. She began by referring to the numerous recent newspaper headlines decrying opioid addiction that sensationalise the issue and fuel negative perceptions.
Opioid use in the US is in fact four times higher than in the UK. The current US crisis has its roots in the 1980s, when a movement began to recognise that pain relief was a universal human right. Initiatives to reduce pain were introduced, and OxyContin was marketed as non- addictive, while representing big money for its manufacturers. Evidence and clinical trials have since demonstrated it is highly addictive, with an escalation in deaths by overdose. The Sackler family, who own the developers of the drug, have been the subject of many lawsuits.
While there is over-consumption in the US, around the world there is a lack of access to pain relief. “People need access to cheap morphine and not to expensive OxyContin” she explained, which as the US takes steps to limit its use, is being increasingly marketed abroad.
There were thought-provoking statistics: in the US one person dies every 7 minutes of an overdose, there are 1400 analogs of fentanyl – 380 of which are present in the US and Canada – carfentanil, which is used to immobilize animals is immediately fatal in humans; and they are mostly made in China, arriving via Mexico in the post. With one kilo of fentanyl able to generate £20 million pounds in revenue it’s clear where the appeal lies to dealers, and why heroin is increasingly cut with it in the UK.
However opioid use is still low in Europe compared to the US according to the European Drug Report of 2018. There were 2000 opioid-related deaths in 2017, although it is thought these were mostly caused by heroin and methadone overdoses rather than prescribed drugs.
A study has shown that in the UK 7 per cent of adults have taken prescription drugs without a prescription, of which 0.2 per cent have taken them recreationally, rather than for their medical effect.
Dr Stannard said healthcare professionals should ask patients for any history of addiction before prescribing opioids, and believes doctors “can do better”, by prescribing low doses and keeping prescriptions intermittent.
Echoing the earlier session on chronic pain, Dr Stannard talked about the intensity of complex pain being related to anxiety, stress and other personal factors rather than injury. She asked the audience how many people would ask about a history of child abuse for instance, before prescribing opioids. Very few raised their hands. “There are tactful ways of asking this” she said, “such as, “we know from literature that people in your condition have problems going way back. Can you tell me about your journey here?” Patients don’t mind being asked this if it’s phrased sensitively.”
She advised being empathic, and acknowledging patients’ distress, before ending with a quote from Andrew Green, the British Medical Association’s GPS committee clinical policy lead, which warned against being more focused on the act of prescribing than on spending time with patients.
For more information on the day’s sessions visit APM conference