We at Life have been following Alfie Evan’s condition from day one, and we wish to offer our heartfelt sympathies to Alfie and his family. Due to lack of information in the public domain and the inherent complexity of cases like Alfie’s, it has been very difficult to judge whether doctors were making quality of life judgments as opposed to legitimately adhering to end of life procedures. The distinction between withdrawing life-support and purposefully acting to shorten another’s life is a distinction that Life takes very seriously.
One thing I can comment on is that Alfie has defied doctor’s predictions that he would live for only a few minutes after life-support had been withdrawn. For he is still living almost 60 hours after. Obviously, Alfie is much stronger than some doctor’s realised. Having had family of my own cared for by Alder Hey, I would have to say that our personal experience was that staff were capable, caring, and open to communication. It is sad to see such a struggle between the medical profession and a family in a desperate situation.
Our hearts go out to Alfie’s parents in their suffering and sadly it is clear that Alfie’s case has highlighted an ever-increasing mistrust in the reasoning behind medical decisions. Our society has repeatedly questioned the ‘value’ of people with disabilities resulting in thousands of babies being aborted based on disability each year; increasing attempts to legalise a form of euthanasia and the sad cases of passive euthanasia on young children are signs that our society’s perception of the value of life is being slowly shifted to making quality of life judgements based on our own personal fears and prejudices, rather than the individual’s situation. Presumptions about a human being’s quality of life should never influence care they receive.
The National Institute for Clinical Excellence guidelines recommend that patients be treated as ‘individuals’ and we are encouraged to see that medical staff have adapted his care since he is still breathing and fighting for life. We hope that cases like Alfie’s should show the medical profession that the best communication between doctors and families is vitally important. To our law makers; take notice! The doctor–patient relationship can be destroyed by mistrust where the patient (or indeed their next of kin) suspect the doctor’s duty isn’t to support life.
What Alfie proves is that no matter how long or short a life is, the impact they have on those around them can be remarkable.
We call for Alfie and his family to be given the best possible help, support and care and our thoughts are with them and all other families at Alder Hey.