Stigma has severe consequences for bereaved after drug-related deaths

“Suddenly, it happens. The boat capsizes. I’m left in a chaos of emotions. Rain trickles down my cheeks.

First comes the shock of the ice-cold water.

Then comes the waves. Realisation.

The realisation that this is final, irrevocable. An unalterable fact.

Then comes the unfathomable grief of loss. The waves of grief hit me, and I am pulled under water each time.

I had to be prepared for the fact that the boat would not hold as boats are expected to do – if you take good care of them.

Then comes the guilt. Shame. Hopelessness. Sleeplessness. Despair. Chaos.

It’s called grief, but for me it’s much more. It is complex.”

This is how Rolf Birketvedt described his loss and complex grief after his son died of an overdose. He gave this speech at the END conference (Bereaved of Drug-Related Deaths) last year.

270 drug-related deaths

Each year, there are around 270 drug-related deaths in Norway alone. Although this is a significant number, there is relatively little research done on the bereaved family members.

At Western Norway University of Applied Sciences, the national research project END – Bereaved of Drug-Related Deaths has been going on for several years.

To date, this study is the largest of its kind in the world, and results clearly indicate that bereaved family members and close friends are an overlooked and unrecognised group of mourners in society.

Symptoms of prolonged grief

In a recently published study, HVL researchers examined symptoms of prolonged grief in family members who had lost a loved one in a drug-related death. They also looked at the characteristics of those who showed symptoms and whether the degree of symptoms decreased over time.

A total of 234 family members were included in the study. Results showed that 60 family members – 26 per cent – had pronounced symptoms of prolonged grief.

Those who struggled most reported suicidal thoughts and isolated themselves from others. Parents, siblings and other family members reported the highest level of symptoms of prolonged grief in the first one or two years after the death.

Among those who grieve, there is a higher risk of developing prolonged grief after the loss of a child or after a sudden death, such as a death by accident, suicide or homicide.

The researchers have found that the same applies to bereaved after drug-related deaths. However, this group is rarely noticed or helped by the healthcare services today, even though many of them need help in managing the unique grief they experience. They also require support and assistance over time.

Drug-related deaths are still stigmatised

One reason many bereaved people do not receive adequate help is that drug-related deaths are still stigmatised in our society, as the END project also shows.

The grief that these bereaved people experience is not recognised. Both the deaths and the deceased individuals have low status in society. Attitudes such as that drug-related deaths are self-inflicted and that the bereaved are better off without the deceased can complicate this grief.

Stigmatisation occurs in many different ways.

Parents find that no one will talk to them about the child they lost. Some are held directly responsible for the death of their child. Others hear derogatory comments about their loved one. In the midst of it all, many bereaved people impose silence on themselves, since their grief is not properly received and because they themselves withdraw from others in guilt and shame.

Rolf Birketvedt described it like this:

“In the worst gusts of wind comes the anger. Alone. Abandoned. Left behind. No crisis care. Irrevocably gone.

Then the storm subsides. Two waves follow closely together: self-blame and self-stigmatisation.

Once the storm has settled, silence falls. Complete silence. No one visits, no one asks, no one understands how I feel.”

Birketvedt is not alone in experiencing this.

Need for greater attention

There is a need for greater attention to this issue and better competence among professionals with respect to the challenges and grief reactions experienced by the bereaved following drug-related deaths.

Prolonged grief disorder is a relatively new diagnosis. It has not been fully implemented in healthcare services. But as it gradually becomes more widely used, it is important that professionals also consider that this group of bereaved people may experience prolonged grief much the same as those whose loved ones died a sudden death.

At a societal level, it is important to communicate that stigmatising attitudes towards drug use may affect the bereaved. It is especially important to be aware that the bereaved may have suicidal thoughts and that many isolate themselves after such deaths.

Researchers hope that the upcoming END conference, which is the last planned conference in the project, will contribute to more knowledge in this area.

This article was first published in Dagens Medisin.