Imagine it was your son or daughter, your brother or sister, your mother or father. They arrive home from hospital and in their bag you discover a Do Not Resuscitate notification. You would be horrified, with good justification – especially if you had visited their bedside daily yet held no discussions about the imposition of such an order, as demanded by the law. Instead, medics played God and decided, without consultation, that the life of your relative is worthless and they can die in an emergency.
This sounds a shocking scenario. Sadly, it is all too common for people with profound disabilities. The latest case involves a man with Down’s syndrome in a Margate hospital. It is, as his lawyer says, blatant discrimination – yet it is happening in hospitals around the country, where doctors take a look at people with learning difficulties and make myopic assumptions about their quality of life. Astonishingly in this day and age, they often conclude it is kinder to let them die than live.
Over the last five years the mental health charity Mencap has collated close to 100 cases of people with disabilities dying in hospitals when their lives could have been saved. The charity believes this is just the tip of the iceberg. Campaigners reel off stories of families bullied into allowing Do Not Resuscitate orders to be imposed or whose wishes were simply ignored. Parents and carers tell of the need to protect their children and charges when in the supposed sanctuary of hospital. .
After 18 years of caring for a child with profound and multiple disabilities, my family has learned that hospital is to be avoided if possible. We have witnessed countless examples of blinkered behaviour: the doctor who ignores the patient, the GP told an injection could be fatal who gives it to her anyway, the nurse told the patient is blind who asks if she would like to watch a video. Despite life-threatening epilepsy my daughter was ignored for six hours when taken in with a fractured skull – and for nine hours when in near-constant seizure.
Carers know patients unable to talk can be left unfed or thirsty, despite often-greater needs. One friend was rung up to be told her profoundly disabled daughter’s airways had collapsed, yet doctors left her dying until her mother arrived half an hour later and demanded treatment. Minutes later and this little girl would have been one more example of death by indifference.
Doctors and nurses are not bad people, of course. Far from it. They think they are doing their best in often challenging circumstances. Unfortunately, too often they come to misguided conclusions about the quality of life of profoundly disabled people and the love felt for them by their families. So they will take aside parents of a patient bought in with a chest infection and ask what they really want done – in effect saying shall we allow your child to die like a sick animal, rather than understanding that people find pleasures in all different ways.
Some institutions are grappling with these issues. The best palliative care teams know there need to be months, even years, of difficult discussions over resuscitation notices. But ultimately prejudice and institutional discrimination in the NHS reflect attitudes towards disability that stain our society – especially towards people with the most complex needs.
For all the genuine pleasure over the Paralympics, disabled people remain second-class citizens when it comes to jobs, transport, housing, education – and health. The epic exploits of Ellie Simmonds and David Weir will not change social exclusion. When even doctors display prejudice, it is little wonder that some scapegoat those with learning difficulties and we witness rising levels of hate crime.
Until society comes to terms with disability, accepting that even those with the most profound conditions can enjoy fulfilling lives and are loved by their families, hospitals will remain dangerous places and doctors will condemn people with learning difficulties to death.
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