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Pain, our worst nightmare

Author: Dr Ros Taylor, Clinical Director, Hospice UK
07 October 2016
  • Papaver somniferum, the opium poppy

Dostoyevsky said, most of the suffering in this world comes about by leaving things unsaid. This is certainly a huge problem in palliative care, but for me, an even worse problem is the lack of confidence and availability, worldwide, of simple good pain control for millions of dying people.

We are getting better at conversations about ‘goals of care’, but no one can pursue their goals if everything hurts; they can’t sleep or move because of pain.

Tomorrow is World Hospice and Palliative Care Day and the focus is on untreated pain around the world.

The paradox is that, while we fear pain, we also fear painkillers. Pain is people's greatest fear – numerous studies (1) in the last 30 years have confirmed that what is most important to people is to have their pain controlled.

Pain is distracting, demoralising, depressing – it reduces appetite for food and for life. Today I met June – her cancer pain was much better. She said that two days ago, in agony, she was ready to give up on life. Today she was smiling, eating and planning.

Dame Cicely Saunders talked about total pain (2). She coined this concept that has underpinned hospice and palliative care for 50 years. She realised that the losses faced by those diagnosed with a terminal illness are never just physical. Losses relate to identity, to employment, to mood, to relationships, to self-esteem. She described these ‘losses’ as psychological, social and spiritual pain.

The physical pain, however, is where she did her ground-breaking research. She clarified and simplified our approach to using morphine and her regimes are still used today – just not not widely enough.

A few words about morphine. It is one of our oldest painkillers and it is still the best. It originates from the poppy, Papaver somniferum and in the west we have access to morphine in liquid form, tablet form, long-acting versions, suppositories and injections. We are adept at using it and, when used well, it can help over 90% of severe pain.

However the myths related to morphine persist in society and restrict its availability to most of the world's population.

There is fear of morphine, opiophobia. It is feared not as a painkiller but as a killer. The fears relate to addiction, criminality, lethality and side effects. This has led to huge restrictions at government level, often in the countries that produce the most morphine.

Even where it is available the bureaucracy is often enormous. For instance, in Armenia four doctors must sign a morphine prescription. In Russia there are increasing suicides due to unbearable pain and poor access to opioids. In India, where 80% of the worlds morphine is actually grown and produced, only 4% of the million people with terminal cancer pain receive morphine. A glimmer of hope is that the bureaucracy in India is improving slowly due to the enormous efforts of founder and chairman of Pallium India, Dr M.R. Rajagopal.

Sadly, in the west, the tide is turning back and opiophobia is increasing. This relates to the over-prescription of opioids for non-malignant pain, particularly oxycodone. This has led to a flooding of the market, with opioids falling into the wrong hands and an increasing number of fatal overdoses.

However, this should not restrict the availability of strong painkillers to those in need. As usual, this is a failure of medical education and perhaps over-marketing by the pharmaceutical companies.

I remember when oxycodone became available in the UK. It is very similar to morphine, but the word does not strike fear into people. GPs and hospital doctors have become very confident in prescribing it as they don’t have to have the ‘morphine conversation’, which might have led to questions about death, dying and prognosis. So it has become widely used for chronic non-cancer pain. Doses have escalated and we are seeing long-term addiction problems and an increase in oxycodone fatalities.

Our recklessness should not punish the rest of the world. There are huge attempts to widen access to appropriate opioid use for cancer pain in adults and children. In the 21st century nobody should die in pain and I recommend the short films on the Life before Death website which tells 50 short stories of uncontrolled pain.

Two initiatives are crucial now – continued education for doctors and nurses worldwide about the safe use of opioids and continued lobbying at government level to allow opioids to be prescribed and available for cancer pain.

We need balance in legislation, safety and access (3). In the UK there is lobbying to legalise drugs such as cannabis to help the symptoms of cancer but perhaps our real efforts should focus on the appropriate prescription and the availability of opioids worldwide.

World Hospice and Palliative Care Day is focusing on freedom from pain. As the late Professor David Roy said, dignity is about "dying without that twisting, racking pain that totally ties up one's consciousness and leaves one free for nothing and no one else" (4).

References

  1. Waghorn M, Young H, Davies A. Opinions of patients with cancer on the relative importance of place of death in the context of a ‘good death’. BMJ Supportive and Palliative Care. 2011; 1(3):310-4.
  2. Clark D. 'Total pain': the work of Cicely Saunders and the maturing of a concept. End of live studies. Weblog [Online] Available at: http://endoflifestudies.academicblogs.co.uk/total-pain-the-work-of-cicely-saunders-and-the-maturing-of-a-concept/ [Accessed 6 October 2016]
  3. Cleary J, Husain A, Maurer M. Increasing worldwide access to medical opioids. Lancet. 2016; 387:1597-9.
  4. Roy D. Ethics and aging: trends and problems in the clinical setting. In: Thornton JE, Winkler WR. Ethics and aging: the right to live, the right to die. University of British Columbia Press; 1988. p. 31-40.

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