Some of the discussion regarding Alfie Evans’ situation centered around ‘extraordinary’ and ‘ordinary’ kinds of life-saving treatment. Questions were frequently raised about whether Alfie was receiving ‘ordinary’ or ‘extraordinary’ treatment by physicians at Alder Hey Children’s Hospital.
How does the Church understand the idea of ‘ordinary and extraordinary’ medical treatment?
This is an essential aspect of the Church's teaching, especially at the end of life.
‘Ordinary’ and ‘extraordinary’ have nothing to do with the frequency with which a particular culture offers a treatment. Ordinary treatment, rather, refers to treatment that is morally required while other kinds of treatment- extraordinary treatment- may be refused or withdrawn--so long as one is not aiming at death, and has a proportionately serious reason.
The distinction is largely accepted by most medical communities today, and was pioneered by the Catholic Church in the late Middle Ages when thinking about battlefield medicine and whether or not a soldier could refuse a life-saving amputation without aiming at their own death. The answer was "yes," and the intense pain of an amputation without pain medicine was the proportionately serious reason. In such a case, death is merely foreseen but not intended.
The Church generally allows individual patients or their surrogates (with a strong preference for the family) to make this kind of moral judgment for themselves, unless it is perfectly obvious that one is aiming at death or that there is nothing like a proportionately serious reason.
It is important to mention that giving someone food and water, even through technical means, is not considered means of "medical treatment" and is not a medical act according to Catholic teaching. It is care which comes from basic human decency.
You wrote in First Things last week that disabled patients sometimes suffer from "slow coding" or "show coding" in hospital settings. Can you explain what that is?
I wouldn't say it happens often, but it happens often enough that medical ethicists think it is worthy of debate.
Sometimes a physician and/or other members of the medical team believe that further intense treatment of a disabled child is inappropriate. Sometimes they may have a point--like when pounding on the chest of a child after cardiac arrest is likely to do little more than break her bones. But sometimes, as I believed happened in the Alfie Evans case, it is because physicians and/or other members of the medical team think the child is so disabled--perhaps due to a devastating brain injury or disease--that further life is not in the child's interest.
Now, a medical team and hospital is rarely forced into caring for a patient, so one option is to refer the parents to another medical team or hospital who will treat the child. But sometimes, despite agreeing with the parents that the child is a "full code" and everything will be done, the physician and/or other members of the medical team will only make a half-hearted effort at treating the child. This is called a "slow" or "show" code, and some medical ethicists defend the practice.
But as I mentioned in my First Things piece, that is only one way that health care providers can and do manipulate parents to get the outcome they want. Numbers can be fudged. Studies can be selectively referenced. Directive language--especially about disability--can be used.
Health care providers have a ridiculous amount of power. We ought to be far more critical in holding them to account.
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You have discussed the concept of "ableism." What does this mean?
Ableism describes a particular kind of unjust discrimination. In this case, it is discrimination in favor of those with able bodies and minds. Physicians tend to be at particular risk for ableism and often rate quality of lives of disabled patients worse than the patients do themselves.
How might those biases have impacted decisions made about the medical care of Alfie Evans?
The treatment Alfie was being given were working quite well, doing precisely what it was designed to do. He needed help breathing, but so do many disabled people. His brain damage was profound, even to the point where it is likely he wasn't conscious of being intubated, and was almost certainly not suffering in any meaningful sense. And though he was likely to die, he was never diagnosed with a disease and we have absolutely no idea how long he would have lived had he been given treatment that is standard in other countries.
Given all these facts, the concern that Alfie's doctors and Judge Hayden had with his brain seems impossible to miss. Though misleading euphemisms were offered about other matters of concern (as they almost always are when the truth is difficult to name), it is very clear to me the decision was made on an ableist basis. The decision wasn't made because, like getting one's leg cut off without pain medicine, the treatment was too burdensome. It was made because Alfie's brain was so damaged that his life was no longer consider dignified--and it was [judged to be] in his best interests to die.
His death was not merely foreseen. Those who wanted Alfie's life support withdrawn were not happy that he started to breathe afterwards. (And, indeed, there is at least some evidence to suggest that Alfie was given drugs after extubation which made it more difficult for him to breathe.) On the contrary, the point was for that for Alfie to die was in his best interest.
This is unlike the amputation example where, if somehow the soldier lived after refusing treatment, everyone involved would be thrilled. The soldier's death was never part of the object of the act. Not so with refusing to treat Alfie Evans.