Feeding tubes and priorities

[Mary S]

And when it comes out on the news that she is dead because she was starved to death will you be morally outraged?

This is such a grey area.

[Bill Glasheen]

And when it comes out on the news that she is dead because she was starved to death will you be morally outraged?

Yes.

I will be outraged at a media that exploited the suffering of the deceased.

I will be outraged at two families (the husband and the blood relatives) who could not come to terms with what should have been a peaceful end by whatever means.

I will be outraged at the deceased, who failed to spare her family of the agony of that decision. She really should have had a living will. But now nobody knows her wishes. She was entitled to refuse extraordinary treatment IN ADVANCE, and that includes force-feeding with a tube when you cannot eat or even comprehend that you are hungry and thirsty. She was also entitled to demand those same treatments. But she didn't put those wishes in writing, and now there is a soap opera for us all to stare at. What a mess!!! Shame on her for shirking that responsibility.

I will be outraged at all those who refuse to find meaning for their existence before they face death, and so fail to comprehend death and life around them.

I will be outraged at anyone who failed to be a decent person to the deceased while she was alive and conscious.

I will be outraged at each and every politician who stuck his bloody nose in business that was not his or her own for his or her selfish gain.

These are not the answers you wanted were they, Mary? But it's what I feel from the bottom of my heart.

I do not blame the judicial system or medicine for having to make and execute a difficult decision. At least THEY did not shirk their responsibilities or act in a selfish manner. On the contrary, they got dumped on and are still getting dumped on. THAT is wrong; I am outraged!

- Bill

[Mary S]

Au contraire Bill - the answer I wanted AND I expected

And do you have a living will?
Do you have a medical power of attorney?
Do you have a will?
Do any of you who have posted on this thread?

[Mark Weitz]

I'm scarfing down lunch before going to my next client so I don't have the time to give a lengthier response (probably a good thing ).

Bill, fine words, well thought out, speaks much to my own thinking and points us in the direction of what our priorities should be.

Mary, I have a living will, a will, and a POA for both property and personal care (in Ontario personal care includes health treatment decisions). And given my work - I do community social work with the elderly and their family caregivers, some of which involves advance care planning, capacity, power of attorney issues, and a few palliative clients - I should have had all of these much earlier. Only last year did I make a POA with a proper living will attached; be sure to give a copy to your doctor, and loved ones.

Every week I see the results of ignoring the issues Bill raises and it is very sad and very frustrating for everyone involved.

Mary said,

And when it comes out on the news that she is dead because she was starved to death will you be morally outraged?

I really feel we should stop referring to this starving someone, as if she was being murdered. Regardless of the issues around Terri Schiavo not making a living will, lets remember that this is, to quote Bill, a living corpse of a human being who is being maintained in a state that, personally, is completely and utterly horrifying. She cannot think, emote, in short cannot do anything other than breathe and be a warm body with a heartbeat. And for the life of me, as much as I can appreciate how terribly painful it is for parents to witness their child in such a state and to finally confront saying goodbye, I do not understand what is so morally and ethically preferable about preserving someone's warm body while their muscles and bones contort - and BTW, what must THAT be like for her, feeling, if she can, her muscles and bones contort, becoming grossly disfigured and helpless. I think this is a freakin' nightmare and it is deeply troubling to me that so many find it difficult to understand that there are worse fates than dying, and to me, living like poor Terri Schiavo is a fate worse than death, being preserved as a warm, increasingly disfigured living corpse while family, friends, professionals, and the courts, and now the freakin' president is intervening and arguing. If someone believes this is preferable to dying, uh, ok then you're entitled but really, let's also consider how utter horrific it would be for her if, in fact, she can perceive something as the right-to-lifers are so keen to point.

How would any of us like to spend one more year, perhaps 20, in that condition. There is such a thing as compassionate intervention to allow death to naturally occur when a person is irretreivably and terribly ill, cannot think, cannot eat on her own, and with medical technology preserving her, will become increasingly disfigured and be prey to other illnesses while in that state. Karen Quinlan's were drawn right up to her chest, her body was so contorted beyond what we want to imagine ourselves being, minute after minute, hour afer hour,day after day.

And this is ethical and moral?

Mark

[Mary S]

Mark, I think it's wonderful that you have prepared for your future (or not your future - pardon the pun). Have those close to you (parents, spouse) done the same?

This tears at me on a few levels - I can't imagine the pain that all parties involved in this are going through....to be the person in that position, to be the person responsible to make the decision that enough is enough....to be the person who fights that decision.

[Mark Weitz]

Mary said,

[quote]This tears at me on a few levels - I can't imagine the pain that all parties involved in this are going through....to be the person in that position, to be the person responsible to make the decision that enough is enough....to be the person who fights that decision./quote]

It is incredibly painful to witness and to consider what each party is going through. I know I said this already but geography plays a role here. In Ontario, in the absence of a court-appointed guardian or POA for Personal Care, the spouse automatically gets to make the treatment decision. It can be contested in court but rarely is. I hope the US develops system similar to Canada's because it seems much more ethical, it stays within the family, and avoids the circus that has been unfolding for some time.

Mark

[sarosenc]

Mark- I appreciate your point of view, but I am confused by your argument. You protest the absoluteness of her vegetative state and yet you also say that she is completely aware of, cognitive, of all the changes/horrors/pain/suffering she is going through without ability to decide or communicate. You have an emotional plea but it seems unsubstantive with exception your insight for, and a nod to Bill, for advocating living wills and personal advocacy.
I am saddened by the circus this has become and the fact that her life is not the most important factor in the majority opinion.

[Bill Glasheen]

I am saddened by the circus this has become and the fact that her life is not the most important factor in the majority opinion.

I'm not surprised you have this opinion and I respect it.

How would you feel if this young woman had a living will and SHE requested no such extraordinary treatments given a persistant vegetative state? Would you still feel there was an injustice if her feeding tube was removed by HER advanced directive?

And how would Mark and Mary feel if she had requested these extraordinary measures in advance and spent the rest of her life in a persistant vegetative state by HER advanced directive?

BTW, I am comfortable with both scenarios. Ultimately it should be her (advanced) decision IMO. I see the proxy status as creating the mess that we all stare at like a highway wreck.

- Bill

[RACastanet]

"And do you have a living will?
Do you have a medical power of attorney?
Do you have a will?
Do any of you who have posted on this thread?"

Yes, all three. Looking at them as I type in fact. Plus my wife has the same set. Also we have 'durable power of attorney'.

Also, my wife knows where all the important documents are. Plus account #s, insurance policies. Also, in my file cabinet is a little file labelled 'should I leave this world suddenly' that has assorted notes and items of interest.

We still have not decided on burial or cremation but I advised my wife to just 'surprise me' should the decision become hers!

I am not planning any sudden departure but my part time retirement jobs carry considerable risk so I must be prepared.

Rich

[Mark Weitz]

You protest the absoluteness of her vegetative state and yet you also say that she is completely aware of, cognitive, of all the changes/horrors/pain/suffering she is going through without ability to decide or communicate. You have an emotional plea but it seems unsubstantive with exception your insight for, and a nod to Bill, for advocating living wills and personal advocacy.

Either you misread my posts or I didn't make it clear. I in no way meant to imply that Shiavo is aware of anything. I'm quite certain I made the point on at least two occasions that she is incapable of cognition. My point on that front, and I'll quote myself, was...

She cannot think, emote, in short cannot do anything other than breathe and be a warm body with a heartbeat.

Later in my second-last post, I tried, perhaps unsucessfully, to point out the irony in the right-to-life lobby arguing that she is or may be capable of thought and feeling and at the same time, this lobby group may not be fully considering what horrible torture, a life of torture, they are commiting this woman to if in fact she can perceive and feel.

This is far more than an emotional plea. I am suggesting that those asking for her life to be artificially maintained also consider the possible horror show this could be for the patient, to get past their own emotionality and ideology and try to see it from thepatient's position.

Bill said,

And how would Mark and Mary feel if she had requested these extraordinary measures in advance and spent the rest of her life in a persistant vegetative state by HER advanced directive?

I'm completely comfortable with that because that would've been her choice. The most important thing here is that a person's choices are respected and implemented. No one's belief system, whether it be the state, a lobby group, whoever, should trump that of the individual in these cases. The argument here for a living will has been made numerous times and doesn't need repeating.

Mark

[Gene DeMambro]

I am not planning any sudden departure

Terri Schiavo couldn't have been all that old when she had her accident.

Karen Ann Quinlan was only 21 when she had her overdose of Valium and alcohol.

Nancy Cruzan was 26 years old when she had her car accident.

The other day I had to prepare IV medications for an acute spinal cord injury for a 3 year old....

Gene

[IJ]

re: ancient opinions/morals and modern science, I don't mean to imply that there are not a lot of ideas drawn from old ideologies. However, a lot of those things are basic principles that seem to me people would come up with in any time: don't hurt; help; let people make their own decisions; balance these issues when they come in conflict; do onto others as you would have done onto you. I really just mean these cultures didn't forsee these technologies and deathlike states and we shouldn't interpret their thoughts on the matter; they had none.

"It doesn't make sense that you would want to take from someone else the only thing they have."

First, we're not taking anything from someone when we withdraw invasive care. Death comes for us all and does the taking.

Second, there are things worse than death. And I'm ever more convinced that some people suffer tremendously and needlessly for a chance at a few more (fill in the unit of time).

Two people came to an old ER I once was in (met neither). Both had rupturing aortas and would die within hours. Both were elderly, infirm, felt they had lived a long, good life, and knew they would likely die regardless but might live to face long hospital stays and poor health if they had surgery.

One declined and died 6 hours later in her room. They had time to get her things from home and to bring a CD player so she listened to her favorite piano selections as she got sleepy and her morphine was turnd up. She died peacefully after saying goodbye to the family, and they held her hands and prayed with her.

The other had the surgery, and had a rocky, painful postoperative course. Mentation was never the same. Pain was constant. Infections, complications followed. Privacy and dignity were nil. Constantly cleaned by and dependent on others and exposed. Rest interrupted by tests, beeps, vital signs, etc etc. Respiratory failure on a ventilator, dialysis. And finally let go after a few weeks of hell.

Now some people do well in the most extreme circumstances. We can never know what is before us. But when you find yourself in extreme circumstances facing tall odds and risk great suffering.... and want a chance at two more weeks... well.... be careful what you wish for.

Most of us want independence, dignity, privacy, comfort, community, rest, and peace. Sometimes these things are not possible... and there are certainly worse things than death.

[Dana Sheets]

...and there are certainly worse things than death.

Much of this comes down to whether or not you agree with the above statement. Is life, any life in any form at any level for any human better than letting that human die?

Unfortunatley the answer will almost always come back "it depends."

Dana

[Mark Weitz]

Dana said,

Unfortunatley the answer will almost always come back "it depends."

Yes, it does. I'm comfortable with these decisions being made by the individual/family level and we're all familiar with how treatment decisions/wishes can be expressed in advance.

It's imperative that state law create a system where people have a means of settling these issues without having to spend years in court. The debate will rage on between those who feel that any withdrawal of treatment and extraordinary means is evil and those who believe that there is compassion in not preserving life at any cost.

But this debate should never be allowed to move outside of the arena of the individual and the family or friends if appropriate. The law should be written in such a way that if you don't have a POA, living will, or some other clear means of communication then you can move to verbal expressed wish, and if that isn't possible then you move to what's often referred to as best interest model where you consider the person's values and any other historical information that can provide a window into the most likely choice the person would have made. Doesn't always work in avoiding court but it can in many instances.

Mark

[Mary S]

The law should be written in such a way that if you don't have a POA, living will, or some other clear means of communication then you can move to verbal expressed wish, and if that isn't possible then you move to what's often referred to as best interest model where you consider the person's values and any other historical information that can provide a window into the most likely choice the person would have made. Doesn't always work in avoiding court but it can in many instances.

Sometimes the only way the law gets written or changed is by moving it outside of the arena of the individual and the family or friends.....