The news during the past few days has featured the heartbreaking story of a five-year-old boy, Ashya King. Little Ashya has a brain tumour, and his parents took him out of the hospital where he was being treated and to Spain.
Ashya’s parents have now been found and arrested, and the boy taken to a local Spanish hospital.
Mr King issued a You Tube video last night explaining the family’s motives for taking his son out of hospital. My heart ached for Ashya’s parents before watching the video, and it aches even more now.
My feeling is that Ashya’s parents want only the best for their child, just as any parent does. They want Ashya to receive the best treatment and in the best place, just as any parent would.
Sadly, I know all too well the feeling of helplessness that surrounds having a critically-ill child. My baby son, Hugo, was struggling even before he came out of the womb, due to me having HELLP syndrome and severe preeclampsia. Hugo fought for his life for 35 days, but succumbed due to extreme prematurity and chronic lung disease, due to his underdeveloped respiratory system.
The circumstances are different, but I can empathise with Ashya’s parents. There is possibly no greater sense of utter disempowerment a parent can feel than when your child is critically ill. You want to take their pain away, to make them better. It crushes your heart when you are unable to do that.
On watching the video, I could sense Mr King’s frustration that he felt the doctors were not doing enough for Ashya. Mr King’s sense that the family are now ‘refugees’ because of their actions and police pursuit is saddening. Even more gut-wrenching, I could feel the sense of despair that he and his wife would be prevented from visiting their son because of an emergency prevention order if they questioned the doctors’ recommended treatment.
Most parents would do anything for their child, and when that child is critically ill that sense is magnified.
You cling on to any shred of hope that your child will recover and live a long, happy, healthy life.
You read things on the internet – some of them accurate, some of them not – to try and get your head around your child’s condition, their treatment plan, the drugs they are on, and all the complicated words that come with that.
I understand the fear of being prevented from being with your sick child. One day I had cold symptoms, which meant I had to stay away from Hugo to protect not only him, but the other babies in case I was contagious. Any bug or virus can be catastrophic for these babies’ underdeveloped systems. Being away from Hugo was for different reasons, but nonetheless it filled me with fear – fear that something might happen while I wasn’t there – and guilt – guilt that I wasn’t doing everything possible for my baby, and that he would be missing me.
Having worked in communications in a hospital for several years, I understand that the police had to be involved in the situation. It is not because the child was a prisoner in the hospital, but because there would have been genuine concern for the welfare of this very sick little boy.
I very much hope that the emergency protection order that Mr King talks about in his video is a misunderstanding. He talks about wanting positive results for his son – of course he does – and he feels these results will come from the proton beam therapy. He had read about the positive results on the internet, but says hospital staff said he doesn’t need to look on the internet. He also talks about feeling ‘processed’, and that doctors have not responded to his requests to discuss the proton beam therapy.
The trouble with cases such as this is there are things that are not, and cannot be reported in the media for all sorts of reasons, including patient confidentiality. This means that I cannot know the full story behind what Mr King says about the doctors in his video, but this does raise further concerns about healthcare communication.
I set up the organisation Bright in Mind and Spirit in Hugo’s name. The focus of it is improving health communication. While mine and Hugo’s care and treatment were exemplary, there were occasions where poor communication and information made circumstances more stressful than was necessary.
Most healthcare professionals want what is best for their patients. Unfortunately, effective communication is often not prioritised. Being in any healthcare environment for any reason can feel hugely disempowering for a patient, and especially so when your child is that patient.
Healthcare professionals of all disciplines need to reflect that each patient (or parent of that patient) is an individual with their own hopes, fears, experiences and values.
Professionals need to communicate effectively, reflecting that there will be complex terms that need to be clearly explained, and that in times of stress things can often go in one ear and straight out of the other.
Cognitive dissonance – not hearing what the speaker is saying, usually due to mental stress which, in a healthcare setting is likely to be due to bad news being given is another factor in not hearing what is being said.
The ability to listen effectively, to make sure the patient understands what is being said is invaluable.
Healthcare professionals also need to understand that patients will look things up on the internet. Anyone with access to the internet will Google absolutely everything – especially healthcare. We did that with Hugo’s care. It is human nature, especially in cases such as this to take as gospel sites that give you the hope you are so badly looking for. Of course the internet has useful websites and sites that are full of utter nonsense. It is also impossible for medical websites to be relevant to each patient’s individual circumstance and prognosis. It is, therefore, better for doctors to accept patients will look on the internet, and direct them to the most genuinely helpful and trustworthy sites.
While Ashya’s case is an extreme one, I hope the communication issues that seem to have contributed to his parents fleeing to Spain with him give healthcare professionals of all disciplines and specialties pause to reflect on their own communications practice.
Ultimately, the vital thing for Ashya is to be with his parents. Ashya is desperately ill, and I am sure that his parents want only the best for their little boy.
I hope the family is reunited soon. Ashya needs to be with the mummy and daddy who love him very much.
Whether or not Ashya receives the proton beam therapy, and whether or not that is genuinely the appropriate treatment for him, I hope the family is able to achieve a resolution.
As the Chief Constable in charge of the investigation has been quoted as saying, “There are no winners in this situation.”
My thoughts and prayers are with the King family.