Is there an “interim” death? – I’ll come back to that later.

We had one of the best family days in a long time yesterday, finishing it up with a double-dose of the Eurovision Song Contest. A review of the best moments (we couldn’t decide which of the songs sang by Johnny Logan was better – they are both fabulous) and then the 2020 Non-Competition – where, as the Irish commentator – who after weeks of cocooning clearly had no ambition or sense of competition left – put it, at least we couldn’t loose.

We watched Conchita Wurst again, singing “Rise like a Phoenix” from the 2014 Eurovision –

And rise like a phoenix
Out of the ashes…

… and one of my all time favourite, Nel blu dipinto di blu from 1958 by Domenico Modugno, who didn’t win, but made the song an international hit as Volare, which connected the blue skies, the passion, and the beauty of Italy to the grey, downtrotten, post-war era of my childhood – dreaming of the South and the Mediterranean:

y me improvisó el viento, rápido me llevó
y me hizo a volar en el cielo infinito.


The highlight of this year was undoubtedly Love Shine A Light performed by the artists of Eurovision 2020 – Eurovision: Europe Shine A Light. Personally, I liked the Icelandic singer best.

Pádraig had a spectacular brunch with us out in the garden with fried bread, eggs and sausages. After a short nap, he had one of his now regular, very lively Zoom-calls with his friends.

He continues doing quizzes and enjoys them tremendously. Reading the questions himself and then picking one of usually three proposed answers. The questions cover history, geography, his own memories, and other fields. Some are quite complex maths questions with additions, subtractions, multiplications and divisions all in one calculation, with answers in the hundreds at times; so he bleeps the ‘hundreds’, followed by the ‘tens’, followed by the ‘singles’. It’s uplifting to see the kick he is getting out of this. And wonderful to see that he is doing better than I probably would.

Isn’t it unexplainable, that not one therapist, over almost seven years, has ever tried this – apart from one, nearly 5 years ago, for a few weeks? That no therapist has ever thought about exploring Pádraig’s mind, motivating his recovery, allowing his participation, encouraging his rehabilitation, using this tool?

Talking about tools – we are still holding the bleeper under Pádraig’s hand and fingers because we haven’t found an OT with a “workshop” who could build him the necessary arm/hand support.

A few weeks ago I heard a presentation about ‘increased tone’ that explained in detail what is happening to Pádraig’s hip, looking into likely reasons, and listing possible treatments. The presentation was not about Pádraig, it was about what generally happens after a sABI. – If this is ‘general knowledge’ amongst specialists, why is that knowledge not applied?

What is “interim” about death?

Ann O’Loughlin reported in the Irish Examiner and Mary Carolan in the Irish Times that Mr Justice Mark Heslin last Friday issued an interim High Court order that “permits hospital not to resuscitate brain-injured woman” – as it “was not in her best interests and would not alter her prognosis”.

He said, it was in the best interests of the woman to make the interim orders, following the recommendations of her treating clinician, and an intensive care medicine consultant.

The woman is in her 50s.

The hospital’s application was being made in the clinical best interests of the woman and was not based on any consideration of scarce ICU resources, counsel stressed.

David Leahy BL, representing the hospital, said that the family had argued she should be resuscitated if required but there was a more recent indication their position may alter and they had sought more information on the hospital’s proposals.

Mr Leahy was quoted as saying that the woman has severe neurological damage as a result of acquired brain injury, extensive care needs and very compromised capacity. She suffers from a range of conditions, is tube fed, non ambulant, sleeps some 22 hours daily and is doubly incontinent.

The family was not present at the proceedings.

There is not a mention of the Assisted Decision-Making (Capacity) Act 2015, signed into law on the 30th December 2015 (sic!).

This Act applies to everyone and is relevant to all health and social care services.  The Act is about supporting decision-making and maximising a person’s capacity to make decisions. The Act will have significant implications for health and social care providers in the provision of safe person-centred care, based on respecting the individual rights of each person.

      • It abolishes the Wards of Court system (under which last Friday’s decision was taken).
      • It repeals the Lunacy regulations (Lunacy Regulation (Ireland) Act 1871 (sic!) and the Marriage of Lunatics Act 1811 (sic!)) governing this Ward of Court system.

The “National Safeguarding Committee (SAGE), Promoting the Rights of Adults who may be vulnerable”, in their Review of current practice in the use of wardship for adults in Ireland of December 2017 stated unambiguously, referring the the Assisted Decision-Making (Capacity) Act 2015:

There is a concern that while ratification is outstanding, the principles established in the United Nation’s Convention on the Rights of Persons with Disabilities, which recognises the rights of persons with disabilities as fundamental human rights, are given no recognition in the current wardship system.

Our interviews with various stakeholders reveal that the current system does not meet basic human rights standards for those in the wardship system, which underlines the urgency of commencing the Assisted Decision-Making (Capacity) Act 2015 and ratifying the UN Convention on the Rights of Persons with Disabilities.

Summarising in my own words: there seemed to be an urgency to allow the hospital not to administer life-saving treatment to the woman – all based on the advice of a ‘treating clinician’ and an ‘intensive care medicine consultant’, under legislation around 150 years old. The decision was taken “in her best interest”, but against the expressed wishes of the family who was not present nor represented at the court hearing.

Nature, the world’s leading multidisciplinary science journal, reported just over two weeks ago:

After severe brain injury, it can be difficult to determine the state of consciousness of a patient, to determine whether the patient is unresponsive or perhaps minimally conscious, and to predict whether they will recover. These diagnoses and prognoses are crucial, as they determine therapeutic strategies such as pain management, and can underlie end-of-life decisions. Nevertheless, there is an error rate of up to 40% in determining the state of consciousness in patients with brain injuries.

I wonder whether the judge, the ‘treating clinician’ and the ‘intensive care medicine consultant’ were aware of the shockingly high error rate of up to 40% and the 2015 legislation? I wonder what qualified the doctors medically and ethically to act ‘in the best interest’ of the woman, and against the wishes of the family in such a complex case? And I wonder, what triggered the urgency of the ‘interim’ order?

The current system does not meet basic human rights standards for those in the wardship system, yet life and death decisions are still being taken – on an interim  basis, without family involvement and without independent advice.

I wonder what would have happened if Pádraig had been treated by the same doctors and if they had presented his case to the High Court some years ago – in his “best interest” and against our expressed wishes? – Then, Pádraig not only suffered “from a range of conditions, is tube fed, non ambulant, sleeps some 22 hours daily and is doubly incontinent” — he also had a tracheostomy.

Am I missing some important detail?

In the meantime – fly like a Phoenix, me improvisó el viento, rápido me llevóy me hizo a volar en el cielo infinito.

We are all in this together.

There is no interim death. Once you are, you are.