Persistent Vegetative State - would you want to live that way?

[jgibson2[$]]

In another thread, TheWorm said:

theworm said

For her family this may still be about her, but it seems like she has become the "poster child" for a larger fight, and that is wrong.

There is very little question that she has become the poster child for a larger fight. If her feeding tube is re-connected, the legal appeals will go on. If it is not, she will become a martyr to that larger fight. IMHO, the only real good to come out of this whole thing is the discussions going on about personal choices and the thought going into them.

Because of my job, I've probably given much more thought to this sort of thing than most people. There are certainly worse things than dying. Some of you will feel that Terri's life is one of those. Believe me when I say I've seen far worse. If she's in a persistent vegetative state, she feels no pain and doesn't know whether or not she's "trapped" in her body. If, as her parents claim, she's aware and responsive, then she does know that. That's actually scarier to me.

One of my co-workers asked me if I would choose to live in that state. My response was pretty flippant -- "Who would!" It's not what any of us would choose for ourselves, but some people will end up that way. We should all think about that possibility, discuss it with our loved ones, and put our wishes in writing so that we don't become the next "poster child".

I wouldn't choose to have a feeding tube removed in order to hasten death. My choice actually has nothing at all to do with hope of recovery, because in most cases, the hope is so slim as to be pretty much meaningless. It hinges on my belief that each person is entitled to have their basic needs met - including food and water. It also hinges on my belief that I was created by a God who can make use of my life whether I'm expressing myself badly via my computer or lying in a bed unable to communicate.

I would not choose to be maintained on a ventilator if I were in a persistent vegetative state, but I would want the feeding tube. I wouldn't want any aggressive surgeries, but I would want basic things like personal hygeine and dental care to be provided. I would want those around me to remember that I had once been able to respond and might still be able to understand them.

[phoenixx]

For the non-nursing users, please xplain the difference between PVS, that type of coma where you have some response, and the type of coma we all think of a coma, if you can.

[slick4591[$]]

I would want an injection to put my body to sleep. I would not want my body going through starvation.

[jgibson2[$]]

phoenixx said

For the non-nursing users, please xplain the difference between PVS, that type of coma where you have some response, and the type of coma we all think of a coma, if you can.

Excellent question. I skipped right over the concept of coma - which is by definition short term and went right to the long-term condition.

Here's a definition from NIH:


A coma is a profound or deep state of unconsciousness. An individual in a state of coma is alive but unable to move or respond to his or her environment. Coma may occur as a complication of an underlying illness, or as a result of injuries, such as head trauma. A persistent vegetative state (commonly, but incorrectly, referred to as "brain-death") sometimes follows a coma. Individuals in such a state have lost their thinking abilities and awareness of their surroundings, but retain non-cognitive function and normal sleep patterns. Even though those in a persistent vegetative state lose their higher brain functions, other key functions such as breathing and circulation remain relatively intact. Spontaneous movements may occur, and the eyes may open in response to external stimuli. They may even occasionally grimace, cry, or laugh. Although individuals in a persistent vegetative state may appear somewhat normal, they do not speak and they are unable to respond to commands.



Someone who is in a coma may need a ventilator. A person who is truly in a persistent vegetative state is generally capable of spontaneous breathing (other medical conditions may enter into this).

Here's another bit of information from Merck Medicus:

Relatively few patients will remain in comathat is, with eyes closed and no evidence of wakefulness for more than 4 weeks. Patients who show no signs of consciousness after their eyes open usually fit the criteria for the vegetative state(VS). Persistent vegetative state (PVS) is a prognostic term that refers to a chronic condition in which basic arousal (i.e., wakefulness) and life-sustaining functions (e.g., respiration, blood pressure) are generally intact, despite the absence of behavioral signs of meaningful interaction with the environment. The American Academy of Neurology recently adopted the position that the VS should be termed "persistent" at 1 month, and considered "permanent" after 3 months following nontraumatic causes of unconsciousness and after 12 months following traumatic injury [27]. However, rare exceptions to this have been cited.

That's a much longer article and if you read through it, you'll find descriptions of syndromes in which the individual is less severely affected than in PVS, but still quite severely handicapped.

[jgibson2[$]]

slick4591 said

I would want an injection to put my body to sleep. I would not want my body going through starvation.

I'm not sure that the "save Terri" folks realize just how many people will agree with you by the time this is over. She's going to end up being a poster child for a MUCH larger issue than her family has any idea and in a way that they certainly did not intend.

[emeleel]

I feel pretty much the way that you do, Judy. Once the feeding tube is in, it stays. However, I would back up to some time before it gets to that point, and here's where I need to make my wishes more clear to my husband. I want my husband, or family, to think long and hard before they put in a feeding tube. I know there is only so long you can go with just IV nutrition before you have to go to the tube, but if I'm injured badly enough that I'm not coming out of whatever state I'm in, I want them to get every opinion they can about my chances before they decide I need to have a feeding tube. If the opinion is that there really probably is no chance of recovery, then just don't put the tube in to start with, let me go on. But if there is honest reason to believe that there is even a chance, as much as I'd hate to be a burden, put in the tube and after that, it stays no matter what. If I have any thoughts left in my head, I'll deal with it the best I can.

[phoenixx]

Answer for me is a definite no. No ventillators, tubes, etc. I simply can't imagine there would be any semblance of "quality of life" after PVS.

[anderclayton]

jgibson2 said

I'm not sure that the "save Terri" folks realize just how many people will agree with you by the time this is over.

You mean as opposed to the 'starve Terri to death because we don't want to admit we are killing her' crowd? If you chained someone to a wall and let them starve to death would it be any less killing them than shooting them? If anything I'd say it would be worse.

I'd tend to agree with slick but am not particularly set about that one. I really would prefer not to live in a vegetative state. My Grandma was in one for the last few years of her life. Both that and Alzheimer's are pretty high on my list of ways-I-wouldn't-want-to-end-up.

Ander

[mjfrombuffalo[$]]

I've put pets to sleep who've lost most of their quality of life and I would hope someone would show me the same kindness. To be trapped in my head and not be able to interact with the world would be maddening (in the literal sense). To have a shell of a body operating on autopilot and no cognitive processes going on would just be a stupid waste of resources that could help someone else. Inject something in my IV and let me go to Heaven or whatever afterlife there might be (or oblivion) that much faster, TYVM.

[emeleel]

BTW, perhaps Judy can answer this, or MNM - how long can a person go before they have to decide to insert a feeding tube? I know of people who have lived on IV nutrition for 4 or 5 months, but those were people who were pregnant and just so sick that they literally could not keep anything down. Not sure how this applies to someone in a coma or vegetative state.

[mjfrombuffalo[$]]

My question would be the opposite - if you agree to a feeding tube temporarily to see if there's X signs of the possibility of improvement, how long is "temporary" without getting court crap involved?

[erik_kosberg]

I have got to put things in writing. I’ve told various family members that I wouldn’t want extraordinary measures taken but have been vague about exactly what that means. Must do this soon. Must.

I was on the phone today with my dad talking about other stuff and out of the blue he said that he wanted to give me durable power of attorney for medical decisions. I’m guessing that a lot of families are having similar discussions.

[MrsNormanMaine[$]]

Ethically, the decision to remove a feeding tube is no different than the decision to insert a feeding tube. Human bodies do not come equipped with feeding tubes, they are a modern invention. They were invented to allow food and fluids to be given to people short term while recovering from serious illness. They have been taken and moved into the chronic care arena for long term continued support.

Before the invention of the feeding tube, comatose people or those in PVS died as there was no way to give them food and fluids. Since their invention, people in these conditions can live decades (the longest case on record being a woman in West Virginia who suffered a ruptured brain aneurysm in her 20s more than fifty years ago. She's still alive in her 70s and will probably live another ten or fifteen years).

The human body was designed, in cases of severe illness, to dehydrate. It's not painful and it's not agonizing as the Schindler's are trying to portray it. It's a natural condition. Working against it with food and fluids actually causes more discomfort than letting god and nature take their course. People are throwing the words 'hunger' and 'thirst' around in an inappropriate context. We are all familiar with these feelings but we know them as they play out in healthy people and bodies. They are not the same in people with profoundly different central nervous systems and medical conditions. These individuals do not have hunger and thirst as we understand them and, therefore, cannot starve as this implies those feelings and responses. A better way to think of it in the terminally ill is a natural shutting down of body processes. All adding nutrition and fluids does is actually contravene the designs of nature and god. God didn't invent the feeding tube, humans did.

A few things to keep in mind on this whole case.

Family law on medical surrogacy is quite clear and the courts have followed the law to the letter and found, quite correctly, for Michael Schiavo every single time. The Schindlers have known for a while they cannot win legally and this has prompted them to promote the media circus.

It is unclear, as a society, how we want to divvy up precious medical resources but we're going to have to think about it. There are hundreds of Terri Schiavos all over the country, and, as the boom ages, there will be thousands and thousands more as strokes and dementing illnesses set in. Every dollar spent on such cases is a dollar not available for healthier children, prenatal care or keeping ERs open. The health system in this country is on the ragged edge financially and congress has yet to act in any way other than to cut budgets.

It is imperative, as an advanced society, that we allow adults to make their own determinations on their health care wishes. Terri Schiavo did not leave them in writing but courts have found clear and convincing evidence of what her wishes should be. They need to be respected, no matter how much they may go against the grain of her parent's beliefs.

We has human beings are having difficulty with this case due to primordial instincts. One of the first things we learned to do when we became social animals was to care for each other by feeding each other. There are hundreds of thousands of years of social instinct we're trying to overcome and this is what provokes the visceral reactions to the whole affair.

Dr. MNM

[poseidon]

I frankly don't know what I'd want. Part of me doesn't relish the idea of laying there doing nothing. Part of me says medical marvels and cures are going to happen more and more frequently as we learn more and more about the human body, and the brain especially.

I'd hate for a loved one to pull the plug on me and for a cure to come a week or a month later. I can't imagine the guilt that someone would feel because of that.

[jgibson2[$]]

emeleel said

BTW, perhaps Judy can answer this, or MNM - how long can a person go before they have to decide to insert a feeding tube? I know of people who have lived on IV nutrition for 4 or 5 months, but those were people who were pregnant and just so sick that they literally could not keep anything down. Not sure how this applies to someone in a coma or vegetative state.

The only thing I'd add to what Dr. MNM said is that IV feeding is MUCH more invasive and high tech than a feeding tube. It's only used for people who can't be fed by mouth or tube. It's very hard on your liver and puts you at risk of serious infections. It's what you wean people OFF of to a feeding tube if they're ill for a long time -- assuming that you can. Pregnant women with hyperemesis gravidarum can't keep anything down, regardless of how you put it in their stomachs, so a feeding tube generally won't help them. Someone who can't swallow, but can digest and absorb special formulas can live for quite a long time with a feeding tube.

I'm flabbergasted by the woman who's been alive for 50 years. Average life expectancy for someone in PVS is 2-3 years. She's sure blown the curve.

[frazzledspice]

As Judy said, if I wasn't aware of it, it wouldn't matter to me. But it would matter to my family. I wouldn't want them to have to go through the ordeal that the Schindlers and Schiavos are going through.

I know two families who have loved ones who have feeding tubes, and who are both young enough to live many, many years. One patient is what I would call minimally (and occasionally) conscious. She will maintain eye contact and occasionally smile. The other patient is in what I would call a classic PVS.

I try to be as supportive of both families as I can. The first patient was one of my best friends. I would not wish their long-term stress and grief on my worst enemies, much less my friends, and I would never wish it on my own family.

I agree with Melanie that the best course is not to insert a feeding tube until there is some prognosis on recovery. Both of these patients were on IV's for a month.

In both cases, doctors encouraged the families to let their loved ones go. In one case the family felt that the doctor was doing this to cover up his surgical mistakes. In both cases, the family held out hope for recovery.

If a brain scan is taken, and the doctor says there is only brain stem activity, and the family isn't sure, I think they should let a second doctor review it. A third. A fourth. However many it takes for them to be convinced of its accuracy.

One family berates itself continually for having made a decision they now know, in remembered conversations, was contrary to the patient's wishes. They pulled out all the stops because they didn't believe all the tests.

Perhaps, in addition to a living will, it's best to appoint someone as your legal guardian who can maintain some objectivity--perhaps a friend or more distant relative.

I don't think mothers will ever make the decision to refuse extraordinary treatment, even if they torture themselves later because they know they didn't honor their child's verbally expressed wishes.

[pippadaisy[$]]

Judy, they've actually had some success with NG tubes placed in such a way that they circumvent the stomach and go right to the small intestine in some HG moms. Of course, a couple of them have vomited up their tubes.

Also, doesn't IV feeding or TPN totally wreck your liver after a period of time?

Frazz, I disagree. There are moms who will not let their children suffer, and allow a peaceful passing. The maternal instinct is to not see your child hurting, and I think each person interprets that individually.

[mjfrombuffalo[$]]

frazzledspice said

Perhaps, in addition to a living will, it's best to appoint someone as your legal guardian who can maintain some objectivity--perhaps a friend or more distant relative.

For medical situations, that's the Health Care Proxy. Guardianship, at least in NYS, also encompasses your money, unless you have a separate Power of Attorney, but that can be revoked by lawsuit and someone else can be named guardian (including a court-appointed neutral party who doesn't even know you).

mj
been there, done that, playing broken record once again

[pippadaisy[$]]

MJ, can you separate them out like you can in your Wills? For instance, we have a guardian listed for the kids, but a separate financial guardian for the money they'd get from life insurance, etc.