I would like to share with you my impressions from Anthony’s last hospital stay.
First of all I would like to explain my reasons from a loving mum and also a doctor perspective. We care for Anthony even more knowing that he is so innocent and has suffered so much already. We love him to bits and can’t imagine life without him. We’ve been fighting every day for our little angel’s life to be as comfortable as possible. Seeing him suffer is unbearable, intolerable and even more painful as we learn about our limitations and the unavoidable outcome.
We’ve been trying to avoid hospital stay as much as we could, knowing that each one has its own risks. This time Anthony has been gradually deteriorating and as he picked up a chest infection he struggled with his feeds. I knew that passing a Nasogastric tube would be the best option; I started him on antibiotics and inhaler. The same day I was trying to contact his regular team to arrange the necessary equipment but unfortunately no one was available. The on call Doctor (who did not know Anthony and, not surprisingly, had no knowledge of his condition) demanded for him to be admitted. I tried to explain that we can take better care of Anthony at home providing we have appropriate equipment and medication but she would not listen and informed me she would contact Social Services if we were to take him home. And so, Anthony was admitted to the 6 bedded room with 4 other children who were all in severe conditions, coughing, sneezing and spreading all sorts of viruses and bacteria. Anthony needed oxygen and nebulisers which I was hoping we could arrange for him to have at home too.
Anthony was dehydrated when we arrived to hospital and despite several request for a NG tube we had to wait till the evening for somebody to place it. Then we were told we won’t be able to have neither oxygen nor nebulisers at home as this is against hospital protocol. I’ve done 4 months placement on respiratory unit and I know that this is not the case, especially when dealing with terminal illnesses; but there was no discussion. And so we ended up in hospital.
On the third day Anthony was off oxygen and there was no reason why we could not go home. In a meantime the pharmacist had to mess up with the formulation of Topiramate and as a result Anthony was given inadequate dose 2 hours later which resulted in severe seizure. His milk was never ready on time and one time it arrived cold an hour later. I would like to point out that I don’t want to accuse anyone of negligence. I know how difficult job is to look after 30 or so distressed and unwell kids and their demanding parents. I appreciate all nursing care and their effort. I just want to say that this admission might have been avoided if the doctors LISTENNED and had fundamental skill EMPHATY.
Now, this is the final point to my reflections and it’s also a pledge to all my professional colleagues. What makes a good doctor?
It’s easy: PATIENT comes first. Not his heart, stomach, clots in the vein. PATIENT comes first as a whole being with his both physical and spiritual needs, with all his past and present experiences, with all his feelings and needs.
As a DOCTOR you are in a privileged position as you should have a knowledge but also ability to STIPULATE what would be the best for YOUR PATIENT as a HUMAN.
Don’t order unnecessary investigations, just for the sake of fulfilling your hunger for theoretical basis or research. SEE the WHOLE PICTURE.
You are there to provide help and professional expertise but let your PATIENT DECIDE!
And, let your patient end it, the way he wishes! Don’t be afraid to let him go…
Don’t be afraid of death…