I’m deliberately posting this on Easter Sunday – the content is profoundly appropriate.
This is a series of short excerpts from each chapter of Beginnings: Interrogating Hauerwas edited by Leixlip lad Kevin Hargaden.
The outline of the book is in this post. This is an excerpt from Chapter Seven, Medical Ethics, Disability and the Cross.
How do we think of modern medicine? What questions do we need to be asking as Christians when facing life and death decisions? In whom or what do we trust and how is this revealed in what we expect or hope medicine to do for us? What should we be saying NO and YES to?
This is a long conversation ranging over a number of topics. The thread tying them together is Hauerwas’ work in critiquing liberal modernist assumptions within the practice of medicine and how ‘the disabled’ are treated.
As Brian Brock puts it at one point .. “the technical apparatus of caregiving, organized by liberal society, gets to define the field” (201). This is the tyranny of the expert; how power is ceded to the medical professionals : how we put our trust in medicine to such a point that – as Hauerwas likes to say – we begin to believe that it will enable us to get out of life alive.
Books discussed are Suffering Presence and Naming the Silences. This post only touches on one aspect of the discussion – Brian & Stephanie Brock’s encounter of the health care system through the experience of their disabled son Adam, who also has leukemia and a degenerative eye condition. It’s a very honest and moving account.
Naming the Silences (1990) talks about the need to hear and listen to those actually suffering before talking about suffering. It also hones in on the issue of facing childhood leukemia. Brock, the interviewer, is coming at this discussion from first hand experience of both. He comments that
I feel in an especial position to revisit it and probe the whole theology of modern medicine and the role of church and family in offering a better way. (214)
These are my words and they may or may not be accurate to the discussion: the issue here is how the juggernaut of medical professionalism and high-tech treatments swamps our humanity. We treat because we can, but all sorts of ethical and moral questions do not get asked.
For example, in the children’s leukemia ward, progress of how to treat childhood leukemia is mostly made by what is, in effect, experimentation on children. There will be little benefit for the child being experimented on, but over time advances are made … and so goes the process. But this is a process that is largely hidden from parents and children. (215-16)
Brian Brock tells of he and wife fighting to have their son treated free from involvement in medical experimentation – and how incredibly difficult it was. Hauerwas adds:
SH: I was talking to one oncologist who said, “You know, we’re pretty good now at curing hard tumors.” And I said, “How did you get there?” And he said, “Oh we just used the drugs we had. We’ve had them on hand but we just got better at doing it.” I said, “How’d you do that?” And he said, “We experimented on kids.” And I said, “Did they die?” And he said, “Yes.” And I said, “Did you tell the parents it was experimentation?” He said, “No, we told them it was therapy.”
Even if they had told them it was experimentation, many parents of course are so desperate to have their children live they’ll say, “Oh yes, do whatever you think is necessary.” I do think that what’s crucial here is a truthful medicine, in which the parents have some sense that if they want to use these experimental techniques on their kids, that their children may well suffer pain they wouldn’t otherwise have suffered and will also die. (216)
Which leads a bit further on to this exchange ..
BB: We are in an odd kind of Mobius-strip world in which medicine can then only be funded because it is experimental and going to produce more high-tech medicine.
SH: I keep saying that Americans are committed to the idea that if we just get smart enough then with our medical technologies we will be able to get out of life alive! It’s not going to happen.
BB: Taking it back down to the concrete level: even with all the improvements in success rates, leukemia is still a terrible disease to treat because what you are treating is the bone marrow. You can’t get to it without a needle or a drill. And you treat it by injecting poison that is so toxic to the body that you have to put it in an arterial vein. If you put it into a peripheral vein it will burn right through the blood vessels and into the surrounding tissue. This means that when the disease is discovered you need both to get the chemo going and to surgically implant a port, so you don’t burn up too many of the peripheral veins with the chemo. But the kid at the point of diagnosis is pretty sick, so their immune system is not working very well.
I say all that because I vividly remember sitting on the edge of the hospital bed with Adam on my lap and holding the wound on his chest from where they’d put the port in. My despair was complete as I saw the incision slowly splitting open because his skin and his blood were unable to muster the strength to bind the wound. I tell this story because leukemia is a disease that leaves no marks at all, but the treatment leaves incredible wounds. I know people would find your comment about the barbarism of those treatments offensive, and yet any truthful account would say that it’s the treatment that is so scarring. You cut and stick and poison the kid because the only alternative is their dying. (218-9)
And Brock adds this from the perspective of a parent of son who is mentally delayed and largely non-verbal.
Adam hurts but he can’t verbalize where it hurts. He thus seems incapable of being incorporated within this medical narrative. In this, he seems to be more than a canary in a coalmine— another way that you often talk about disabled people— because he reveals modern medicine for what it is. Because he is impermeable to the mutual pretenses that govern our lives, for him there seems to be no other reality than trust and communion, or its lack. Without a horizon of future or past, he demands presence. (219)
And it is this demand for presence that meant that the Brocks decided that they would not subject him to the cruelty of a bone marrow transplant and 6 weeks in a bubble to avoid infection. To be separated from physical presence would be beyond bearing.
It did not come to this – but these are the sorts of questions that Hauerwas and Brock are probing and encouraging Christians to think hard about rather than unthinkingly go with the modernist flow of whatever the medical experts say.
It would be wrong to end here without some more theological comment. At the end of the chapter Brock raises the idea that disability is a hermeneutical key to reading Hauerwas. By this he means that as Christians we are to live by and under the cross.
The Christian faith is not a success story. It is God’s glory revealed and victory won at the cross. The church and all theology can never move past the cross. We live in a world that Hauerwas has spent his life trying to engage Christianly – a world of war, pain, mental illness, physical illness and death, slavery, patriarchy and so on. (237)
He is, I think, an ‘anti-success theologian’. He takes seriously that the foolishness of God is wiser than the bankrupt wells of human wisdom. And that is profoundly counterintuitive in a North American culture dedicated to success, happiness and positive thinking.
Comments, as ever, welcome.