When someone dies suddenly and unexpectedly, their surviving family will always be left with lots of questions.
And when someone dies violently, and the death is related to health care, those questions can only increase.
What actually happened? Could anything have been done differently? What would have made a difference? How can we be sure it can’t happen again to anyone else’s family?
These are entirely legitimate questions – yet many bereaved families struggle to get any answers from the NHS. They are often faced with a bureaucratic system that’s difficult to navigate and which often fails to supply information when asked.
Despite the PR claims, many NHS Trusts seem to have real problems in being truly open and honest with bereaved families.
There’s loads of official NHS guidance encouraging them to do so – Saying Sorry, Being Open, Duty of Candour and the Serious Incident Investigation framework – soon to be replaced by the Patient Safety Incident Response framework (PSIRF), to name but a few.
And the failure to answer legitimate questions can often prevent families cope and recover from their loss. It can leave them psychologically stuck, still grieving, unable to move on.
Better family engagement can help both NHS Trusts and the families.
- Families can often have significant information about the care of their loved one that may not have made it into the medical notes – so any investigation without access to the family’s experience will inevitably be partial, not reflect the full picture, nor capture the full extent of the learning. You get much better investigations when families are involved.
- Families can also raise basic questions, which may have been missed by busy staff, that give them fresh perspectives – a different viewpoint on which to reflect and learn.
- Listening to the families can humanise what happened and support clinicians learning by understanding the true impact on those left behind. Someone’s story can be a powerful aid to learning
- Good family engagement can help prevent hostile media coverage and parliamentary scrutiny. Unhappy families are more likely to complain and raise concerns publicly.
- Engaging well with families shows them that the death of their loved one matters – and that someone actually cares. (Otherwise, how would they know?)
- But most of all, engaging well with families, with respect and transparency, is obviously the right thing to do.
It’s the least that any of us would expect.
Author Julian Hendy was a co-founder of Making Families Count and is the director of the Hundredfamilies charity. Julian is one of the speakers for the Making Families Count webinar: “Managing risk – working with families to prevent mental health homicide”.