Using positive engagement to fill in the gaps

Last week I met a lovely young woman whose brother had died from a brain tumour 10 months earlier.  She felt that she could tell me about this because I met her in a work capacity and she had already listened to me talking about grief and my own struggles to find a way through traumatic bereavement.

As we talked, she opened up a bit more and started telling me how she was feeling.  I haven’t been able to get the conversation out of my head and the more I thought about it, the more I felt the need to write about it and share it with you.  I have a strong feeling that her story, her thoughts and her feelings are the stories of so many other people.  To me it was an every-day illustration of what’s going wrong between the healthcare providers and the families of patients and the effect that this can have on the lives of the family members for many years.

She was aware that her brother was unwell and she knew that the prognosis wasn’t great and that it would probably end in her brother’s death.  But the family was told that as he was young and healthy, there was a good chance that with good care and the right treatment, it would be several years before they had to look at end of life care.

The treatment had been going well and he was responding really well.  He was cheerful and chatty and they were making plans for a big family holiday once the final treatment had finished.  It was totally unexpected when their mother had a call from the hospital to say that the brother was not doing well and over the next few hours the situation completely flipped over.  That day they found they were looking at an end of life situation and within a week he died.

The family were left utterly grief stricken and bewildered.  Events had moved so fast they had barely had time to process them.  After his death the family were so busy trying to deal with the multitude of things you have to deal with after a death and they were almost too busy to process what had happened properly.

On the day of the funeral the grief hit the family badly, knocking them sideways as grief will do.  When we met, 10 months had passed since her brother’s death but she was still struggling, not only with her grief, but with the multitude of questions which filled her mind night and day.  Why had he died so quickly when he wasn’t supposed to?  Was there something that the hospital could have done differently? Was there something that she could have spotted and didn’t? Worst of all, had something gone wrong with the treatment that no-one at the hospital was telling them about?

She didn’t feel that she could speak to her parents about any of this.  As is so common, as their only remaining child, she felt a huge weight of responsibility to nurture and support them.  She wanted to be able to make things better and she couldn’t bear the thought that if she brought these questions up with them, it would cause them further pain.  She felt her role now for them was that of healer, supporter and carrier of their burden so they didn’t have to carry so much of it.

The death wasn’t classified as “unexpected” so there hadn’t been an inquest or even the offer of an inquest.  The parents had not sought answers or explanations from the hospital and none were offered.  Frankly, the family were too busy trying to deal with their loss.  She thought the hospital had given them leaflets about grief counselling and support, but no-one remembered where these were.  In the absence of knowledge, her imagination had filled in the gaps.  Searching for information and for answers, she spent a lot of time on-line, accessing various social media groups and websites.  She had become convinced that the hospital was covering up something dreadful.  She was reading about rumours and conspiracies and searching for real information and truth, but in all the wrong places. 

I suggested that she contact the hospital and if she could, contact the consultant involved with her brother’s care.  I told her that if she could sit down with him and ask him all the questions she had, there was a very good chance that he could give her useful, truthful answers.  I warned her that he wasn’t legally obliged to do so, he wasn’t even obliged to meet with her – but I thought it would be a step in the right direction and even if she didn’t talk to the consultant, talking to someone else who was senior and involved in her brother’s treatment would be helpful and possibly, healing.

At Making Families Count we talk about using positive family engagement from first contact with the patient and their family and throughout treatment.  Then, if something does go wrong, there’s already that good relationship which has been built on openness and trust.  That can make a big difference to the family.  It can also be extremely useful to the providers in ensuring they are part of an open and learning culture.

I couldn’t help but think about how different this young woman’s story would have been if from the moment her brother’s health had started to fail, his care team had asked the family to go in and sit down with them so they could explain carefully exactly what was happening and why, and the family could have asked them all and any questions they had.

There would still have been the terribly sad death of a young man, much missed and grieved for by his family.  But what there wouldn’t have been was a gap in their understanding and knowledge of what happened and why, which inevitably led to their attempting to fill in that gap for themselves. 

As I watched this young woman struggle, tormented and desperate for answers, I couldn’t help but think of the difference it would have made if the hospital had made that additional time to engage with them well and had an open, truthful and supportive conversation.  It may seem a very small thing, but I could see that for this woman, the struggle to deal with the aftermath of her brother’s death was something that sadly had the potential to haunt her for years.  

I spoke about this with one of my colleagues from Making Families Count who had a very different experience.  She felt that it’s crucial that the conversations take place especially when things change rapidly and that families are told what is being done to treat that person. Otherwise – they will fill in the gaps. When her own daughter died they had those conversations and it meant that although they were overwhelmed with grief, they still retained the certainty that everything had been done to try to save her, to try to make her comfortable and pain -free and to address her fear and anxiety. That left them in a very different place and when they were offered a Post-Mortem they declined it as they already felt they have the answers they needed.  After, they wrote to the consultant and received a hand-written letter back, discussing their daughter’s case and how the consultant’s own feelings.  This was very important to them and again, made a huge difference.

It’s possible that the conversations might not have taken place because of the pressure on staff to respond on the day to the crisis.  They may not have thought about the family’s need for information as things were deteriorating.  It’s also possible that the important conversations with the young woman’s family about her brother, may not have happened because of concern about patient confidentiality.  Clinicians worry that sharing the information they knew might somehow breach patient confidentiality.  But that is so easily remedied.

All it needs is for them to have a conversation with the patient and then put a flag on their notes that the patient is happy for the family to be kept informed.  This is a simple, but clear example of positive patient and family engagement that goes way beyond honest communication when things go wrong.  It becomes about positive communication for the patient and family throughout that individual’s contact with the hospital.

Rosi Reed, Making Families Count

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