I am certainly no expert in any of this but I just wanted to share what I know and hopefully alleviate some extra worries that we really don't need at this time.
I have a child with a life limiting condition. He has a palliative care consultant and a palliative care plan. Part of his case management is provided by the Symptom Management nursing team at our local hospice where he receives regular respite. He carries on him an Advanced Care Plan and Respect document detailing what we want to happen in the worst case scenario. I have had countless conversations over the course of his life time about what levels of intervention we want for him as and when he gets more unwell.
Decisions around the level of care a person should receive are not decided based upon a person's disability. Nor are they made by a single person. So when I read the petition it didn't sit right with me, because it goes against everything I've been shown and learnt about treatment options and intensive care for disabled people.
I have no idea who started the petition or what article they say they read, so I did my own research. I checked the NICE website initially where I found guidance for those making decisions around critical care. Their page refers to something called the Clinical Frailty Score which is used in assessing what might be the best course of action for a patient over 65, where the ageing process may have started to make a significant impact on their quality of life and ability to recover from a major trauma or illness. There seemed to have initially been some concern around this as someone young with a long standing but stable disability such as Cerebral Palsy would score highly despite being in good health. The guidance has since been updated to stress that this should scoring system only be used in those over 65 with no long standing stable disability.
I then did some general googling and the only other thing I found was this page advising how to support those with learning disabilities and their families. I found nothing about not providing care to people simply on the basis of them having a learning disability or stable physical disability.
It is very possible/likely that at some point soon we will run out of intensive care beds to treat everyone needing one, and somehow medics will then have to decide who to treat. I don't believe this will be done based on disability. I do however think that if William were to catch the virus and become severely ill, he may not be front of the line for intensive care treatment (presuming paediatric services are also overrun or are being used for adults).
Importantly though, this is not because he is disabled. It's not even because he has a very profound level of physical and cognitive disability. Whenever anyone is given intensive care, thought is always given as to whether that is in their best interests. Being ventilated and put on life support is a really tough thing for someone to go through and there is never a guarantee the person will recover. When we discuss our wishes for William we look closely at his quality of life now. We then consider:
- What we are likely to achieve with a certain treatment option and at what costs might that come at?
- If we treat in this way are we going to bring him back to the same quality of life he's at now or will it be worse.
- How much worse?
- Is it so much worse that there is no quality of life left?
We discuss what quality of life looks like to someone like William because it's obviously totally different to mine and yours! William's quality of life is something of a tightrope. Right here and now I believe William has a quality of life worth living. We constantly grapple with what changes could occur that would knock him off that tightrope. Take his seizures for example, he has many a day, some small and some big and nasty. But I have some kind of internal meter that knows when his seizure level is ok and when it's crossed the line and is tipping that balance of quality of life. When we reach that point we take action and so far we've been able to tip it back just enough to maintain his quality of life at an acceptable level.
As we face the risk this virus brings to him, we have started discussions about what level of care we want for him. In a worst case scenario that choice won't be ours because there won't be enough ventilators and William won't be high priority for one. Again, not because he's disabled, but because his level of disability has led to a very complex medical picture for him. He has borderline respiratory failure and his day to day respiratory needs are tricky to manage. The chances of getting him off a ventilator are lower than most people's and the chances of getting him back to the same baseline, or quality of life, as he has now are even slimmer. His baseline is already way below most people's.
We have some things in our favour though! William has never needed ventilating for a chest infection before (miraculously!) and he doesn't have a scoliosis (curvature of the spine - common in people like him) - both things that are unhelpful when facing a horrible respiratory virus. We are keeping our expectations open to whatever could happen knowing whatever happens God is in control.
So if you're a parent of a healthy (or mostly healthy) child with a learning disability I want to encourage you that treatment is never decided based on the simple fact of whether the child has a learning difficulty or disability. There's a much bigger conversation that goes on taking into account many factors. These are absolutely unprecedented times and it seems likely that medics will have to make incredibly difficult choices about who to treat in what way, and we can't know for sure where that cut off will have to be.
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