From this UK Times piece:
Nine-year-old Daisy entered hospital in 2005 with a tooth infection, which turned septic. The hospital failed to supply the most basic medical care, giving Daisy neither food nor liquid in sufficient quantities. When she began gasping for breath the hospital told the parents that she would be transferred to intensive care, but this never happened.Fuck "quality of life." Just fuck it. It's a concept that does nothing but enable shit like this.
It turned out that this was not an accident, but deliberate, and an official report on the case is being prepared by the ombudsman. As Daisy’s mother, Amanda Healy, told me: “The staff later admitted to us that they had ‘misjudged her quality of life’.” In other words, they had acted under the belief that Daisy - who loved and was loved by her parents and who, in Amanda’s words, “adored just waking up in the morning” - had a life not worth living and therefore not worth fighting to preserve.
One member of the hospital’s staff had said to Amanda, when she complained about Daisy’s lack of treatment: “People like you should realise that children like these are going to die sooner or later.” The remark that most shocked Amanda came from a doctor who was actually trying to be sympathetic, after Daisy had eventually died of a pulmonary haemorrhage: “It must be awful; it’s almost like losing a child.” It was the charity Mencap that put me in touch with Amanda Healy: hers is one of a number of similar cases involving what it calls “death by indifference” that it is pursuing on behalf of the bereaved parents.
Comments
I have to say, I don't think it's the concept of "quality of life" that's necessarily at fault, but people who think a person's disability negates quality of life, and that they (the person making the judgment) have a right to act on that devaluation.
I do think a person should have a right to determine that their own quality of life is unacceptably diminished, by constant excruciating pain, for instance. But, that's for that person, not someone else, to decide. And it's the duty of medical workers to do everything in their power to raise the level of someone's quality of life, not to throw up their hands and say "it sucks to be them, so we're not going to bother helping them to survive." I agree with you that that's inexcusable, and may amount to murder.
All the research shows that health care providers consistently understimate quality of life compared to self-ratings or parent ratings of the same people. Unfortunately, most health care providers have never read this research.
It shouldn't be excused by any means, but I think people ignore the burden that this work has on people's mental health too. Having psych evaluations as a part of the job the way soldiers or police do would probably go a long way. Living knee deep in other people's suffering is just as much a job hazard as exposure to communicable disease.
I work in medicine. I'm in my pediatrics training. I've had patients die and I'm caring for other kids who are likely not to live to grow up. A few who are not likely to survive my training. I've filled out the paperwork to send kids home with hospice and I've been there when ventilators are turned off. It's sad, but it's part of our work and part of my calling as a physician. Some of the most human and humane physician's I've met are those in fields with high mortality - oncology, NICU, PICU.
What does my mental health in is not the severity of illness of the patients. It's the calousness of the other health care providers who devalue the lives of those living with illness or disability. Negative - and inaccurate - judgements about the lives of those we serve is a contageous condition of another sort, and one that, as shown above, actually kills.
It's consistant. It's insidious. It's present when the Journal of Pediatrics refers to disabled people - and that includes me - as "poor outcomes." It's present when my professors in medical school spoke of the disabled with amazement that we acomplished the activities of daily living. It's present when disabilities are discussed in lecture as "tragic" and treatments as "miraculous" without ever mentioning the patient perspective. Little messages like this, over time, lead to a devaluing of the disabled life. The death of this child is the natural consequence of generations of devaluing.
I get that sometimes there are difficulties in communication and sometimes messages are unclear. What I don't get is when it appears on one side as if a message was made very clear (do everything) and the other side decided to resort to neglect
I'd like to read the report. I also wonder what effects such a report would have on say, their medicare etc status.
The whole concept of quality of life is completely flawed. The only person who should decide your quality of life is you.
Sorry, ranty. I've been trying to put angry, incoherent thoughts into words since I read the article.