“As [JJ] is in the supine position and has paralysis of his body, it would be very difficult if not impossible to be able to administer first aid to support the choking episode.”
“We discussed that for the recommendations to be changed a re-assessment would be required and this would include observations of [JJ] having some food. As [JJ] has not been eating for some time, I advised that his ability to eat, drink and swallow may have changed as he has not been using the muscles. We discussed that this may have deteriorated, and the skills do not return even when re-introducing eating. To consider a reassessment, he would need to re-commence eating on a plan as advised by a dietitian (due to high risk of re-feeding syndrome) and speech and language therapist in relation to the management of textures. He would also require a physiotherapy assessment to support his posture and establish if he is able to be elevated more than he is currently… This is a process that would take several months and would require collaborative working to be able to establish recommendations that would keep [JJ] safe, the staff team safe and support quality of life. [JJ] felt that for him to start this process he would want a letter writing stating that it’s his choice and he and the staff could at any point choose to ignore the recommendations…”
“I would be willing to do this, but only provided that, when I am capable of eating again, I can exercise my basic freedom of choice to decide what I will eat, being fully aware of the risks.”
“The issue is that [JJ] wants to be fed at risk contrary to the SALT advice. Because of the severe disability afflicting [JJ], his prone position, and the length of his hunger strike it is a recognised risk that re introduction of foods/feeding can lead to death. [JJ] is quadriplegic and has an established diagnosis of X-linked hypophosphatemia (XLH). SALT specialists responsible for [JJ] ’s care have recommended that [JJ] be given a ‘Level 6’ soft diet, and in particular should not be given boiled sweets. He cannot feed himself and therefore staff would have to feed him contrary to SALT advice. Were he to die as a result of the introduction of solids, boiled sweets, or anything other than a ‘Level 6’ soft diet, the relevant individual could be at risk of both criminal proceedings and disciplinary proceedings. [JJ] cannot consent to the serious harm that might occur as a consequence of the staff acting contrary to the SALT advice. Furthermore there could be organisational risk associated with the decision to acquiesce to this. So [JJ] is free to articulate his choice in the matter but in view of the above it is not an option available to him.”