Public debate is required if families are required to fill the gap left by hospitals which now only “care” for the illness and not the patient
I told myself I would write this article as I was dragging my 8-year-old’s drip behind her at 3:30 am when she decided it was time to go for a walk in the semi-lit hallway of a paediatric teaching hospital. My daughter has severe autism, intellectual disability and suffers from epilepsy. Although I am probably a little better informed than most, given my experience in the field of bioethics and health law, I am a lay person. Thus, my description of events will be in terms that are perhaps not medically accurate, and from my own perspective. Having discussed my experience in a non-statistically-rigorous fashion, as a lay person does, with several others who have recently been hospital inpatients or whose relatives have been inpatients, I find that my impressions are uniformly shared. My discourse should not be interpreted as a criticism of the staff of the hospital, whom I found to be as accommodating as conditions allowed. I would also like to make it clear that my concerns should not be dismissed as a commentary on the nursing aspects of my daughter’s hospital admission. They are intended as a critique of the direction of the way hospital services are generally delivered, and this — as is well understood — is the result of many contributing factors.
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