Our Project Lead Ben Williams reflects on the strain caused by COVID-19 to NHS staff & families and blogs about his thoughts for his advanced care plan.
I keep thinking back to a tweet I saw the other day, that I think sums up the attitude of a lot of people at this time. Many who are not working for the NHS are asking themselves ‘what can I do to help?’
Firstly, we are following the advice and guidance given already to help reduce the strain on the NHS. Secondly there are some really cool ways people are finding they can use their skill set to help. I’m fortunate enough to be able to work for a health innovation organisation and we are looking at the tools in development and seeing what can be used by the local health services.
But then I read this headline on the BBC news website ‘Doctors face agonising life-death care decisions.’ and I thought how could I help those doctors? How could I reduce the stress of clinical staff and make sure they don’t face those agonising choices about me or my immediate family?
It then hit me that this was a recurring issue that has come up again and again throughout my life. Many years ago I was an Independent Mental Capacity Advocate and I would be brought in to advocate for those who lacked the mental capacity to make a decision. The work often involved trying to establish what the person would have wanted if they had capacity. The ideal thing would be to find an ‘Advanced Decision’ document, commonly called a living will, in which you can state how you wish to be treated if you at any time lack the mental capacity to make that decision, such as being unconscious.
Sadly these documents were rare, and I only recall seeing a handful of them throughout the hundreds of people I supported. At that time, I worked with the local authority and social care providers to develop a support tool to help with professional discussions about this sensitive issue.
Later when I was on the NICE committee writing their national guidance for dementia, the committee spoke at length about advanced decision documents. It would seem to solve a huge problem, moving the stressful decision making process from clinical staff and would help people express how they wanted to be treated. Shifting the focus onto the patients rights.
More recently, working in the social care system, I found that one of the biggest issues care residents felt was they wanted to talk about sensitive issues, such as death, money and funerals, but didn’t really know how to start or have the conversation. Asking staff to follow the NICE guidance and prompt discussions using an advanced directive helped those who wanted to, to feel more at peace and in control.
We often put off filing these sorts of documents out until we are faced with a life threatening situation. Sadly, most do not fill these documents in at all and family members have to make difficult decisions for us at a hugely stressful time or even have to spend hundreds of pounds taking the case to court if they don’t have Power of Attorney. But we can avoid many of these issues if we complete a free Advanced Decision. Email a copy to your GP to save on your file, and give a copy to loved ones. That reminds me, I just moved so I need to update my own Advanced Decision too – just one way of playing my part to reduce medical staff stress.
In my community we review our advanced decisions every few years, but if you don’t have a copy you can find a rather comprehensive one here.
