What is an end-stage illness?

I've seen a number of people say that even if Terri Schiavo wasn't in a PVS, she would have qualified as end-stage under Florida law. Michael Schiavo's lawyer Atty. Felos said in his closing arguments in the 2002 trial that she was end-stage, terminal, and PVS. But none of the three are borne out by the facts as far as I can tell. I've dealt with the PVS diagnosis extensively in earlier posts, and I have a hard time believing anyone who has not shown any deterioration and perhaps even shown improvement over the course of 15 some-odd years could be considered end-stage or terminal. Doctors agreed that Terri would most likely live for many more years if her tube feeding and hydration were not withheld.

I've been searching Google on the term end-stage illness, and it seems that it's almost universally used in the context of a progressive terminal disease such as cancer, Alzeimer's, renal failure, etc. Most websites seem to use the terms end-stage and terminal interchangeably.

So just having no chance of improvement but no likelihood of getting worse wouldn't qualify a disease as end-stage--otherwise having your finger amputated would be an end-stage condition, since the finger isn't going to grow back but your situation isn't going to get worse either.

Merriam-Webster's Medical Dictionary defines end-stage as "being or occurring in the final stages of a terminal disease or condition" http://dictionary.reference.com/search?q=end-stage

Here is a discussion of the specific Florida law we are talking about. The article is called "End of Life Choices" from the May, 2001 issue of "Jacksonville Medicine" and discusses Florida statute 765 in detail.

It says, "Some of the problems with any definition of "Terminal" are that there is no commonly accepted clinical definition of "Terminal." Is it —Days? —Weeks? —Whenever death is inevitable? To some extent, the creation of the "End stage" category was meant to clarify "Terminal." But note the broad difference between "no reasonable medical probability of recovery" (found in the Terminal definition), versus "to a reasonable degree of medical certainty, that treatment of the irreversible condition would be medically ineffective" (as found in the End-Stage definition). The End stage definition is a much higher standard, and probably results from the lawmakers too closely tracking another state's statute when intending to broaden our own statute." http://www.dcmsonline.org/jax-medicine/2001journals/May2001/choices.htm

Here's a similar discussion of Maryland's statute with almost exactly the same wording:

"Of those three medical conditions, the persistent vegetative state is one that is, essentially, a medical diagnosis. A "terminal condition" is not a specific medical diagnosis but, rather, a determination that the underlying condition will cause imminent death. This is akin to the old "living will" formula that death would be imminent. Presumably, these two conditions would be ones somewhat familiar to the health care profession. In the one case, it is a term of art in medicine and in the other case it is a standard that physicians have applied in traditional "living wills" for many years. The third condition (end-stage condition) is an attempt to address the problematic aspect of the "death-is-imminent" standard. Because medical science is increasingly able to postpone death, this standard addresses the situation where the underlying condition is irreversibly marching toward death and would not be waylaid by medical intervention." http://www.fredfranke.com/lecture14.htm

The full extent of Terri's brain damage was from a single incident that took place in 1990, and by one month after that incident her brain was extensively damaged. I have seen no evidence that the condition or extent of her physical brain damage changed between 1990 and 2005 (except for one doctor who testified that there was slight improvement in the CT scans).

She was, however, improving between 1990 and when therapy stopped, and there is evidence that she developed new behaviors and skills (including at least a few learned behaviors) even in the year 2002.

Remember, she was in a coma immediately after her accident and required a respirator and tracheotomy. During the time between which her CT scans showed no visible damage and when they showed extensive cortical damage, she improved enough so that the only assistance she needed was a feeding tube and came out of the coma.

Her medical records show that, yes, a few care providers (mostly the doctors who only saw her occasionally as opposed to the therapists who worked with her regularly) felt she was not making progress after that, but a number of them did document that she was making progress in responsiveness, abilities, physical mobility and awareness. There is quite a bit of evidence that she was making progress and showing improvement, and no evidence that she was significantly deteriorating at any point after her initial injury.

The doctors (including her primary care physician who had been treating her since 1998) testified at the 2002 trial that there had been no deterioration at all in her condition, and that her brain scans and other tests showed no absolutely no deterioration between 1996 and 2002.

There is substantial evidence supporting improvement and none supporting deterioration--hardly a progressive illness.

You can find the Florida laws regarding the choice to withold treatment for an incapacitated person here: http://www.leg.state.fl.us/statutes/index.cfm?App_mode=Display_Statute&URL=Ch0765/ch0765.htm