Personal Views: Freedom from pain goes a long way to a “good death”
Authors: Julia Riley
Journal: BMJ (2003)

My sister in law died of metastatic malignant melanoma five years ago, leaving behind a six year old boy, a four year old boy, and a pair of 10 month old twins. My recollection of her last weeks is pain, pain, and more pain.​pain.




Figure 1



A child at Winston's Wish: I light my candle on important days when I want to think about my dad




A year after her death the family attended a bereavement weekend at Winston's Wish—a charity that supports bereaved children and young adults—in Gloucestershire. Winston's Wish offers young people support and information to help them understand what has happened, slowly allowing them to learn to live with their loss. The charity has worked with over 2000 young people since 1992.

The charity workers' greatest skill is in encouraging children to communicate non-verbally. On their weekend the children were asked to colour sand and pour it into a test tube. Each colour had a particular meaning. The children were asked to write on a piece of paper what the colour meant to them, with reference to the person who had died. They were also asked to write on a porcelain plate anything that had made them angry about their loss. They then threw the plate in the bin, listening to it as it shattered. My four year old nephew coloured his sand red. He explained that the red was for “PAIN.” My eldest nephew wrote PAIN on his plate and shattered it. In the discussions that followed both boys were able to articulate their memories of the screaming that came out of their mother's room as she was dying. My brother corroborated their memories: he recalled that every time she screamed she was given more diamorphine. After each dose of diamorphine she either slept or became paranoid.


There was no real analgesia, only sedation and side effects


There was no real analgesia, only sedation and side effects. Why? It is a question that has plagued me ever since. Here she was being cared for by a good palliative care service in London, experts in WHO's “analgesic ladder.” Yet, if you now ask any member of the family whether she had a good, pain free death, the answer will be a categorical “no.” Pain is multifactorial. It is impossible for relatives of patients—even when doctors—to objectively assess their pain. I was a newly qualified consultant in palliative care at the time, and my memory of complete impotence remains. Over the years since my sister in law's death I have come to realise that her experience is not the norm. I have, however, seen other people whose pain has been equally difficult to control.

Looking back, I wonder whether some patients just did not respond to morphine. This has been shown to be the case for codeine: 6-7% of white people do not respond to this drug. Genetic variation can be a powerful factor in pain relief. It is reported that between 10% and 30% of patients treated with oral morphine have either intolerable adverse effects or are inadequately treated, or both. The reason for this variability has not yet been shown.

Today, many more analgesic drugs are available. Opioid switching—changing from morphine to an alternative opioid—is gaining popularity in pain management. Its aim is to improve a patient's response to analgesics and to reduce adverse side effects.

At present most patients have a pain free death. A significant minority, however, do not. It is for such patients that research is needed. The goal would be to identify patients who do not respond to morphine, before analgesia is given, and then to find an effective alternative analgesic.

Research has begun. My hope is that in the future a good, pain free death can be the right of everyone, so that other people do not have to go through the extreme distress suffered by my late sister in law, my brother, and their boys.