Living and dying in pain – it doesn’t have to happen

75% of the world’s population have no – or inadequate – access to controlled medicines for pain relief. This means that, for many people, a diagnosis of a serious illness such as cancer brings not only a traumatic confrontation with mortality, but also the fear – and reality – of excruciating pain.

Pain serves the evolutionary function of letting us know when we are injured or ill. It is a high-alert warning that we need to seek help. But it often persists long after this initial alert, leaving the person incapacitated and in agony and their family and caregivers distressed.

The theme for World Hospice and Palliative Care Day 2016 is: ‘Living and dying in pain: It doesn’t have to happen’. This year, the theme focuses in on physical pain. While recognising that there are many different types of pain, such as psychological, spiritual, social, cultural pain; this year’s focus on physical pain draws attention the practical steps that can be taken to ease suffering for millions of people.

It is a tragedy that the idea that living and dying in pain doesn’t have to happen seems – to many people – to be counter-intuitive. People believe that pain and death go hand in hand. Death is painful. To imagine it to be otherwise would be unrealistic.

However, this is not true. Yes, there is pain, and some people experience complex pain that is difficult to control either with medication or other therapies. But for the majority of people pain is possible to manage effectively with access to the necessary medications, proper training of healthcare workers, and awareness of the facts around controlled essential medicines among the general public.

One of the principles of palliative care is to assist people to live as actively as possible until their death, to allow them to interact with family, to really engage in living and to have good quality of life, even in the face of their illness.

For example, in his book: ‘Being Mortal’ , Dr Atul Gawande writes about a visit to his daughter’s music teacher in hospital. Her leukaemia treatment was not working, and when he asked her what her fears for the future were, one was the fear of more pain. He advised that she try hospice. With hospice care she went home from hospital, and a few days later wanted to start teaching music again.

Her pain was controlled to the extent that she was able to live an active life. She continued teaching for four of the final six weeks of her life. Well trained healthcare professionals with a knowledge of and access to controlled medications for pain management transformed her end of life experience.

Successful management of a vast proportion of the pain that exists in the world is possible. A sad consequence of the War on Drugs of recent decades has been the creation of national laws and policies that make it extremely difficult – in some countries illegal – for people in genuine need to access medications to treat their pain.

Another hangover from this belief system is a fear among healthcare professionals, and the public, that controlled medications, specifically opioids such as morphine, are too dangerous to use.

In fact, morphine is the most effective, affordable analgesic that exists and, as such is referred to as ‘the gold standard’ of pain relief. It can be administered safely by doctors or nurses with proper training.
In Uganda, specially trained nurses are tasked with prescribing morphine to ease patients’ pain. In a country with an extraordinarily low doctor to patient ratio, this progressive step is essential to relieving suffering.

According to certain cultural traditions, physical pain is valued as being spiritually productive, and as always it is important to respect individual choice in whether relieving pain would be helpful or intrusive. However, physical pain is often so debilitating that spiritual or emotional growth is not possible. Nothing exists but the pain. The role of healthcare workers is to help control as much of the pain as possible so that the person can focus on other aspects of their life.

There are many practical steps that can be taken to eradicate the unwanted pain that people suffer. National laws and regulations that obstruct access to pain management should be addressed, and healthcare workers need to be trained so that they can help people live and die free from pain. This year’s World Hospice Palliative Care Day, on 8 October 2016, provides a platform to focus on these issues.

Kate Jackson

Kate Jackson is founding editor of the international edition of the online publication ehospice. Ehospice International is run by the World Hospice Palliative Care Alliance (WHPCA), organisers of World Hospice Palliative Care Day.