Friday, March 18, 2005
A General Rant Inspired by Terri Schiavo
Well, I guess it's my turn to take a shot at this, because God knows everybody else has, including people who apparently don't know the first goddamn thing about what happens to people in comas.
Yes, I'm mad. Can you tell?
To clarify: I think the Terri Schiavo case has been mishandled. The way things are at this time I would not disconnect the feeding tube. However, if Ms. Schiavo had a PET scan and MRI which confirmed that she was in a persistent vegetative state, I would. The sad thing here is that everybody involved in the case is so busy staking out their personal battle grounds that no one is really paying attention to the patient (even though they say they are). Instead of lawmakers proposing dumbass bills for passage or subpoenaing Ms. Schiavo for testimony she can never give - my jaw dropped when I saw that, I couldn't believe someone was pulling that one - the husband and MD should have been legally compelled to get the test that would, you know, ANSWER THE QUESTION of what her clinical state actually is. But no one is interested in getting the test; the husband is afraid that it might show she isn't in PVS and the parents are afraid that it will.
Here is a link to an info page on coma and PVS.
Now, let us move from the specific to the general. Let's assume we are talking about a patient with documented PVS, who's had all the right tests, who has been in this state for more than a year. Heck, let's say five years (half of the length of time Ms. Schiavo has been in this state). For the record, as a primary care doctor I have never taken care of someone with PVS, but I have taken care of a lot of stroke patients, dementia patients, and others who are permanently bedbound. Let me share with you what happens to someone who can no longer move.
Okay. I hope what I have outlined gives at least a partial illustration of what caregivers and family have to deal with in a PVS-type situation. We aren't talking Sleeping Beauty here. This disease state destroys the body as surely as cancer or diabetes; it's just a lot slower. Now, let's go to the withdrawal-of-food-and-fluids issue. Here is a link to a hospice website; I apologize for the design, it's hideous, but it contains some useful references to studies done on the withdrawal of food and fluids in hospice patients. Honestly, I was surprised to see the level of shock and horror expressed by various posters on this subject. I have news for you, people; this has been happening for years. Withholding food and fluids is not torture. It is not. To alleviate the concerns of family or patients about dehydration, hospices will often run a very slow IV, or even intramuscular, fluid drip specifically to make sure that the patient remains comfortable. They use mouth swabs. There are things that can be done to keep the patient comfortable - that's always the first priority. If you still feel that the withdrawal of nutritional support is untenable, what about removing people from a ventilator? Is it better? Worse? Why?
This has gone on way too long, so I'll try to wrap it up with a memory. During my medical residency my maternal grandmother died after a massive stroke. She'd never made a living will, but she had been active and functional until shortly before her death. My father (a doctor) was there with my mother and her sister. The doctor showed them the MRI results - no hope of recovery. My mother and her sister declined a feeding tube; my father concurred. My grandmother died peacefully within 48 hours. None of us have ever questioned that it was the right decision. (Yes, I know it's anecdotal, but I thought a firsthand story might be helpful.)