"Quality of life" and people with cognitive disability

There's a series of posts up at Neonatal Doc's blog that discuss "quality of life" and babies with conditions known to cause significant cognitive disability, such as trisomy 13 and holoprosencephaly. The posts begin with Inappropriate and continue (so far) through Futility.

I'm not picking on Neonatal Doc; he (or she?) is certainly not the first doctor to automatically equate "cognitive disability" with "poor quality of life". Nor, unfortunately, the last.

However, as part of today's Futility post, Doc mentions that previous commenters have raised the issue of using quality of life as some kind of guide in making treatment decisions. Doc then goes on to say:

"It is my understanding of the laws in the U.S., though, that we are not allowed to use poor quality of life as a reason for withholding or withdrawing care. We cannot discriminate against people with impairments; withholding life support would constitute discrimination".

It appears that Doc is trying to say that it is illegal to withhold treatment based on a diagnosed condition (in other words, to use a particular diagnosis as the sole reason to withhold treatment). But that is not what Doc says. Doc that it would be discriminatory to withhold treatment from people with a "poor quality of life", then uses the example of people with "impairments". Doc, in other words, has equated "impairment" with "poor quality of life". He uses one to illustrate the other.

"Quality of life" discussions per se--as part of the decision making around end of life or treatment decisions--are not against the law. It is not discrimination to withhold life support from people with "impairments" on an individual basis.

This is not the same as using the "impairment" as the reason to withhold care. It is "discrimination" to pre-judge that people with "impairments", on the basis of that impairment--as a class--do not deserve life support or other treatments. It is, in other words, discriminatory to equate "impairment" with "poor quality of life".

Lots of people do this. That includes doctors and other health care professionals. That doesn't make it right.

Doc then discusses the issue of withholding care because it is "futile", and admits that often this terminology is simply a cover for the truth: the care is withheld because of "poor quality of life". As Doc explains:

"Eighty or ninety per cent of babies with Trisomy 13 or 18 die by age one year. They often die because they simply stop breathing; the respiratory center of their brain, responsible for regulating their breathing, doesn't work properly. They can also die because of other birth defects, such as serious heart problems. If a normal child were to stop breathing, we would begin support with a ventilator. This is not usually offered Trisomy 13 or 18 patients. We say we don't offer it because it would be futile; the baby would eventually die from another problem caused by the Trisomy. But the truth is, many of the Trisomy 13 and 18 children if put on a ventilator, if their heart defect were repaired, and a feeding tube placed, and anti-reflux surgery done, could possibly live for years. It would not, in my opinion, be a life of high quality (and I am not advocating it be done.) Most of these patients cannot even smile, let alone walk or talk or indicate their desires, but they would be alive. So when we withhold life support from them, are we really doing it because it would be futile, or because the quality of life would be so poor?"

Or, I might ask, are you doing it because you are prejudiced and cannot imagine such a life as worthy of life? You may not even realize this prejudice; it may be so automatic--this correlation in your mind of cognitive impairment and "poor quality of life"--that you can't separate the two concepts.

Try.

It's the information they obtain from medical providers--including neonatologists--that families use to make critical decisions in the early days of a baby's life. It's one thing to give honest appraisals of probable outcomes. It's one thing to give your explanation of Trisomy 13 or holoprosencephaly, including current life-expectancy data. It's even one thing to give your honest opinion about treatment, if you are directly asked.

It's another to pre-judge that a particular chromosomal anomaly will cause such a poor quality of life that the affected child is better off dead.

Doc apparently believes children with trisomy 13 or 18 don't have a high enough "quality of life" to benefit from life-prolonging procedures. I believe the families in this support group (for example) do not agree. Surely there is room to individualize decisions of such extreme importance, and not rule out the possibility of treatments for any baby?

50 years ago they weren't repairing esophogeal atresia in babies with Trisomy 21. 30 years ago babies with trisomy 21 weren't authorized for open heart repairs in some hospitals--excluded because they had "poor quality of life". Today, this would not happen and would be seen as wrong. Yet it's not the babies themselves who changed, it's society and medical science. Things change. Withholding treatment based on preconceived notions rather than individual decisions about individual babies leaves out a lot of options.

Life, for one thing.

mary, who is, after all, "Emily's mom"