Life as an Extreme Sport

Category: Bioethics

It’s about time I added a category for my field of study, eh?

Right to Refuse

Academics, Bioethics, Politics

In light of yesterday’s Vatican letter clarifying the former Pope’s commentary on food and hydration for PVS patients, I offer a snippet of McCann et al’s 1994 JAMA article on comfort care for terminally ill patients:

While much attention has been focused on the rights of patients to refuse medical interventions, little has been written about the benefits that competent terminally ill patients may experience by exercising this right, particularly in regard to artificial feeding. We found that patients with terminal illness can experience comfort care despite minimal if any intake of food or fluids. This is consistent with the experience that others have had in caring for dying patients. Using a patient-centered team approach, we were able to direct our efforts toward each patient’s particular needs. ((McCann et al, Comfort Care for Terminally Ill Patients. JAMA, October 26, 1994. Vol 272, No 16.))

When you cannot communicate directly with the patient, you communicate with the caretakers and family. What then, is the benefit for these actual people you interact with, that these surrogate patients might receive and experience by exercising the right to refuse for the body/person they stand in for?

Part of the Catholic ruling is based on the notion that the PVS patient, unable to communicate with the world at large, is still able to communicate with the world internal, that is, with God, and we humans should not step around the authority of God to circumvent His will.

Looking at the ruling, we can see that the focus is, beyond this focus on fundamental human dignity (which is intimately tied to communion with God), the alleviation of suffering – or more specifically, the avoidance of causing suffering to begin with. But as McGee asked in a lecture given a year ago in front of a variety of students, and I tied into Cassell, what does it mean to suffer? Can a PVS patient suffer, if by definition of PVS we are saying there is nothing left to return? That the body has become a biologic husk, no longer a Being in the world as much as a Memory in the world? Doesn’t there need to be something there beyond chemical and biologic processes in order for there to be suffering? (And to keep Cassell in the picture, there is of course a difference between pain and suffering ((You can read me slightly misreading Cassell here)). Suffering is feeling, experiencing, while pain is ‘just’ the biological response. A sea anemone can ‘feel’ pain without suffering, and it’s an important distinction to make, and keep in mind.)

The letter from the Offices of the Congregation for the Doctrine of the Faith emphasizes the alleviation of suffering, but makes an error in focusing only on the potential suffering of the patient, while ignoring the entirely probable suffering of those around the patient, the affective whole of family and friends. It’s almost ironic, given the Catholic emphasis on non-individuality, that the letter and ruling itself focus on the individual to the detriment of the whole.

Bacteria and Einstein – What?

Academics, Bioethics

This one is mine, and I am fiercely proud of her! She’s a senior at RPI, in Science and Technology Studies as well as Communications, and I swear, I could pick her up and drop her into a CHID happy hour and you’d never know she wasn’t one of us.

Kristy has been one of my evil minions since the beginning of summer, and has made the decision to stay on through the academic year. She makes my life 10x easier, picking up my slack, and eagerly jumping into projects, with an enthusiasm that is equally familiar and amusing.

Although she doesn’t know it yet, part of her new job duties will include writing a blog post once a week or so – she’s too damned talented to not put out there for everyone to see!

in the zone

AMBI, Bioethics

I zombie-drove home from Lake George last night, a drive I remember in fits and spurts, which is always a terrifying thing in retrospect. Likewise, my memory of getting into my apartment and bed has a dreamlike quality to it, and I know it’s not entirely accurate, if only because some details I remember are actually, by physical evidence, not true.

One of the cats has made me very aware of how unhappy he was I had been gone – although it’s excessive, even for him, and I’m beginning to wonder if I need to take him to the vet. He meowed almost nonstop for some 12 hours – or at least, that’s what I remember. Did it actually happen?

I woke up at some point, got out of my clothes, and noticed that I am literally a giant bruise over my torso, thighs, up and down my calves, and spotted on my arms like a leopard. My foot was bloody, as was my right hip – I assume the foot is from a blister that I wasn’t aware I had popping, but I can’t figure out where, when, or how I managed to slice my hip open.

The last 24 hours have been surreal, in a literal sense – I fall asleep but am unaware I am asleep, I wake up and wonder if I am still asleep, or really awake. I fell asleep mid-conversation twice, and apparently had one conversation entirely asleep.

To say I am exhausted is, in short, an understatement.

But I am also satisfied. I pulled off a difficult task with minimum problems, and those that existed were resolved quickly – or at least I hope they were both resolved, and quickly resolved. The general consensus appears to be that the retreat was well organized and just good, and although I didn’t have a chance to do everything I wanted to, or talk to everyone I was hoping to talk with, the time wasn’t about me, and the people it was about seemed happy.

But, five days of being “on” has apparently worn me to the bone; it’s been a long time since I’ve done theatre, and I’m out of practice. My stamina was fading rapidly by Sunday morning, and I was grateful that by packing up Sunday afternoon, I could move to autopilot and not worry about anything other than not crashing my car on the way home.

…in fact, as I notice the hypersaturation of colours in the room, and the clear sounds of birds chirping, and the disembodiedness in my hands, I’m not entirely convinced I am awake as I type,…