My son Adam Bojelian had a high-profile life, winning multiple awards for his poetry and healthcare advocacy. He also spent half his life in hospitals in seven different NHS regions of the United Kingdom. Adam experienced the absolute best and the very worst of NHS care. The last months of his life were particularly traumatic for him and all those around him. Adam was a very bright boy, and it was his dying wish that I should do all in my power to ensure, as far as possible, that others should not suffer as he did.
My background is as a lawyer, I am a solicitor and healthcare law academic. My PhD researched how UK paediatricians make end-of-life decisions for disabled children, particularly their understanding of the relevant law and professional guidance. I surveyed thirty-nine senior paediatricians routinely making such decisions and conducted in-depth interviews with a cross section of them. I have long taught healthcare law and ethics to both law and medical students as well as to health professionals. I have also served on numerous guidance, investigation and research committees concerning child health and death. I served on the NICE end-of-life care for children guidelines committee and quality standard committee and was a co-author of the UK Government’s 2018 Statutory and Operational Guidance on Child Death. I also have a particular interest in child rights and health inequalities in my academic work.
The Adam Bojelian Foundation brings together Adam’s legacy, his lived experience and my academic work and experience. It is our family’s way of fulfilling Adam’s wish to help stop others suffering as Adam did. As I was at Adam’s bedside during his hospital stays across the UK, I obviously saw everything, not just as a mother, but also through the lens of a healthcare law and ethics academic and child rights expert. I observed huge variation in how staff behaved, both the care Adam received and the support my husband and I received in different centres. I saw that when staff were well-supported the care and support, they gave us all was outstanding. Where staff were badly supported the care and support left much to be desired.
My PhD study with UK paediatricians found two distinct approaches to their end-of-life decisions. Some doctors I surveyed and interviewed focused very sharply on the law and their professional guidance. I called these doctors ‘Hardliners’, as this is how one of the doctors described herself. Knowing I was a lawyer (I was based at Edinburgh University Law School) they were keen to share their knowledge of law with me, quoting statutes and cases. These same doctors had often self-funded legal and ethics courses. However, in these same doctors I perceived, in their survey and interview responses, a clear fear of law. They feared ‘being struck off, sued or worst of all, prosecuted for gross negligence manslaughter. When they discussed their fears, it was clear to me, as a lawyer, that these fears were usually misplaced, based on misunderstandings of law, ethics, and professional regulation.
My study identified a second group of doctors, who I called ‘Softliners’ in contrast to the Hardliners. Softliners did not think law or regulatory guidance were particularly of interest when they were making their end-of-life decisions and they did not display the same fear of law and regulation found amongst the Hardliners.
As well as their attitudes to law, ethics, and regulation the Hardliners and Softliners also showed significant differences in how they made their end-of-life decisions, as these two illustrations show:
I went on to map the ways in which Hardliners and Softliners make their decisions to how case law and professional guidance says end-of-life ‘best interest’ decisions should be made. Perhaps counterintuitively, it was the non-legally focused Softliners, with their focus on wide involvement, balancing benefits and burdens of treatment, treating each child as an individual, and looking beyond the purely clinical issues, who were making their decisions, precisely as required by the law and their professional guidance. In contrast, the legally focused Hardliners, with their use of heuristics (a common one they described using was a rule that a child deemed to have learning disabilities should never have intensive care treatment); lack of consultation and focus on clinical rather than wider welfare issues, were found to be acting contrary to what is required by the law and professional regulation.
These findings echoed what I witnessed with Adam. Practitioners who gave Adam poor care and failed to provide support to us as a family, seemed to be motivated by fear and misunderstandings of law and regulations. The purpose of AdsFoundation is to help overcome practitioners’ fear of the law, which causes so much harm not just to those in their care and their families, but also to the practitioners themselves. It is also to help in an understanding that legal and ethical care is, at its core, about good communication and relationship building, rather than ‘following rules’.
We work directly with NHS Trusts and others creating and providing programmes of education in law, ethics, and communication. We will also, from 2022 provide direct workshops and courses on healthcare law and ethics for individuals. AdsFoundation also produce free to download resources, including a quarterly law and ethics update and provides helpful links to third party healthcare law and ethics resources.
We considered carefully before setting up whether to be a charity or community interest company (CIC). We chose the latter for several reasons. We have the benefit of a wonderful stakeholder expert focus group, who bring expert by experience, academic, and NHS staff perspectives. As a focus group they are critical friends, offering us the benefit of their expertise and experience. However, they have no legal responsibility for AdsFoundation, as they would have if we were a charity and they were Trustees. I suspect that this legal responsibility is not something some would want to take on.
The day-to-day work of the Foundation also very much draws on my personal expertise as a lawyer and healthcare law academic and tutor. Currently I provide all my time and expertise on a pro-bono (unpaid) basis. The corporate structure of a CIC, allows me to both work for the organisation (and at some future time to receive a salary, provided it is a reasonable one) and to direct it. A charity Trustee must not benefit from their own Trust, so I could not be both a Trustee and receive a salary if we were a charity.
Whilst setting up and running both a charity and CIC requires a lot of diligence and work, more is required for a charity, making a CIC a preferrable option in our case. This will not be the case for all organisations, particularly those wishing to take advantage of the tax and financial benefits of being a charity. I would also recommend that charities also become companies limited by guarantee, to limit the liability of their Trustees.
Please do take a look at our website, you can read more there about Adam and AdsFoundation, as well as access all our links and resources. I very much welcome your feedback (there is a Contact Us tab on the website) and of course, do get in touch if we can help you.