“It is much more important to know what sort of a patient has a disease than what sort of a disease a patient has.” - Sir William Osler






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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.

• Bedsores. You're going to get them. The human body was made for activity, not to remain supine for long periods of time. I understand in the Schiavo case claims are being made of abuse on the part of the hospice staff. I don't know whether those claims are true or not, but I can say that the presence of bedsores does not ipso facto prove abuse. Exhibit A: Christopher Reeve. If ever a patient got impeccable care, it was he; but he died of sepsis from an infected bedsore. You can minimize them with proper care, but you cannot prevent them.

• Infections. You're going to get them. This patient can no longer empty his/her bladder properly nor clear his/her respiratory secretions. This means 1) pneumonias and 2) urinary tract infections. Plural. This leads to 3) multi-drug-resistant infections with superbacteria that never really go away, and eventual death.
  

• Contractures. You're going to get them. Muscles which cannot move are permanently in a flexed state. Over time, the muscle cells shorten and tighten. Knees draw up. Heels dig into buttocks. Hands curl inward upon themselves until the fingernails dig holes in the palms (I have seen this). "But this can be prevented!" comes the cry. Well, yes. Sort of. To prevent contractures the person's hands, feet, arms and legs must be strapped tightly to splints. 24 hours a day. I have seen sentient patients cry and scream when the splints are put on, so I can assure you this isn't comfortable. For a non-sentient patient that issue doesn't apply, but you still basically have somebody strapped to a rack with no freedom of movement. Did I mention bedsores? And as for physical therapy, it isn't going to happen, at least not in the long run. The main criterion for approving coverage of physical therapy is clinical improvement. I can see a patient with a particularly generous insurance plan getting physical therapy for up to a year after the onset of vegetative state, but certainly not longer than that. That means that if the patient is going to continue to get therapy the family will have to pay for it. Our sample patient would have a bill as long as your arm (therapy six days a week, 52 weeks a year, for 4 years).

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.)

posted by Dr. Alice at #