A right to grieve

How can support be improved for those bereaved through drug or alcohol-related deaths? A new set of guidelines offers advice for professionals who come into contact with substance-related bereavement, as Kayleigh Hutchins reports

‘There is a vast difference between listening and hearing,’ said DrugFAM’s Gill Owen Conway at an event to launch the Bereaved through substance use guidelines last month. Developed after three years of research by the universities of Bath and Stirling, the guidelines were presented to an audience made up of researchers, family members and care professionals for feedback, and to provoke a much-needed discussion.

The research was prompted by the gap in knowledge in how to respond to this isolated, poorly understood group, whose needs were often overlooked. The project conducted in-depth interviews with bereaved family members, detailing their experiences and the type of care they had received – which was often ‘found wanting’. The guidelines were developed by a working group based on this, and highlighted five key messages that were aimed at improving support, as well as providing examples of good practice.

Interviewees were drawn from Scotland and the South West of England, and were mostly female, according to researcher Jennifer McKell, as women were found to be much more likely to open up about their emotions than men. More than half were parents, and included family members of people who had died after a long history of drug or alcohol use, as well as from sudden overdoses.

In such cases, many interviewees had found out about the death from the police, and found the proceedings ‘complicated, confusing and lacking in consideration of their needs,’ said McKell. The first key message, therefore, was to show kindness and compassion to family members, who said they were often poorly informed about the processes that would take place after such a death, causing them more distress.

The bereaved often felt a lack of empathy from the professionals they came into contact with. There was a lack of humanisation of the deceased, with family members feeling as though their loved one – and they themselves – were being stigmatised.

This was closely tied to another key point – the importance of language. Many family members often felt as though they had to hide the real cause of death, said McKell, fearing the stigma associated with drug use and the idea that the death was somehow ‘self-inflicted’ and not the same as other kinds of bereavement. ‘You get a label on you, you are labelled… it’s as if, when she died, “Oh another one bites the dust”,’ said one interviewee of her experience.

Using language like ‘junkie’ or ‘drunk’ made the bereaved feel as though they were the subject of judgement from others, causing them to isolate themselves from possible sources of support.

These people were dealing with ‘complex emotional reactions’, said researcher Lorna Templeton, which made it crucial to treat every bereaved person as an individual – a third key message. Emotions could be a diverse mix of relief, guilt and grief, and so support needs would vary from person to person.

Professor Richard Velleman, another member of the research group, discussed how the number of professionals that family members came into contact with could be vast – from police to lawyers and funeral directors, many of whom didn’t understand the issues surrounding drug and alcohol addiction.

This meant many of these professionals felt they were not equipped to offer support, so it was crucial to empower them with the right kind of knowledge to make a contribution to the care of bereaved families – another key point of the findings.

With the guidelines now ready to be distributed, the event gave stakeholders the opportunity to discuss what could be improved, and how the information could be disseminated effectively. The final message of the research was that professionals needed to work together to share knowledge and good practice with those who needed it, to ensure that the needs of bereaved families were being met and that they would no longer have to suffer ‘disenfranchised grief’.

For more information, and for copies of the guidelines, visit www.bath.ac.uk/cdas