When the hospital plays God…

When the hospital plays God…

It’s Karen Ann Quinlan and Terri Schiavo all over again.

Only this one’s different. This one involves a pregnant woman, and the rules have changed. Because this is Texas, where, thanks to George W. Bush, fetuses trump everything, and the only sacred thing is birth. But this isn’t just about Bush and it’s not just about Texas, either.

Did you know that roughly one third of the United States have enacted similar laws? Where do you live? Have you checked the rules? Is there the remotest chance you could become pregnant, then incapacitated, and then be forced into the role of incubator at the pleasure of the State?

This article, from the Vermont Law Review, dates back to 2005, and was published shortly after Bush signed the bill into law in Texas.

DIE FREE OR LIVE: THE CONSTITUTIONALITY OF NEW
HAMPSHIRE’S LIVING WILL PREGNANCY EXCEPTION

But the article isn’t about Texas. It’s about New Hampshire. Which other states have such laws on their books? I can’t tell you. There is no quick summary to tell me which states ignore Advanced Directives in favor of pregnancy. And I’m not in a position right now to devote the time it will take to review the laws in all 50 states, the District of Columbia and the US territories.

I strongly suggest that if you have even the remotest chance of becoming pregnant and you think you have a Living Will or Five Wishes document in place, you check your state laws and make sure your family won’t be trapped in Erick Muñoz’s living hell.

Fetus in Muñoz case is “distinctly abnormal,” attorneys say

We don’t understand nearly enough about the dying process that I would even consider the possibility of remaining on life support to continue carrying my unborn fetus, unless that fetus was near term. A couple of days? Yeah, I could see that, but Marlise Muñoz was barely out of the first trimester when she collapsed. Based on nutrition alone, that’s going to have a massive effect on the health of the baby. Then there’s the oxygen deprivation, circulatory regulation, and more.

And then, there’s the enormous load of ethical questions of cost for care and who should bear them. Texas is absolved of the responsibility. If the hospital shunts its responsibility back to the already grieving father who is taking legal action against the hospital, how is this even remotely right or responsible?

The question is so charged with ethical questions, in fact, that the first judge set to hear the case has recused herself. Don’t skip this article. It has links to a bunch of other related articles I won’t reproduce the links here, and to understand what’s happening in Texas, and could happen in your state as well, you need to read through all of them.

Judge recuses herself from Muñoz case against JPS hospital

In fact, there are so very many questions, starting with the right to choose coming from the family, I can’t even begin to list all the reasons why this is so tremendously awful. It’s Quinlan and Schiavo all over again.

I recognize that I’m an atheist at best, but there’s doing what’s right and then there’s this. Religion and morality get in the way of doing the right thing and that’s the sole reason for the separation of church and state.

I find it profoundly disturbing that there is no simple summary of the states that would force a family to maintain a pregnant woman on life support as an incubator for her fetus. In fact, the laws are so variable I strongly suggest that if you have such a document in place, you investigate for yourself what your family will face if they have to make the decision for you.

Pregnancy is such a loaded event. It’s hard enough to imagine the responsibilities of caring for a person from birth through to adulthood. We invest so much in child bearing and so little in child rearing, and focus so much attention on abortion and choice, that we forget sometimes the state will trump our right to choose. If you think about it, you shouldn’t be at all surprised to discover that the next logical step is jail for miscarriage, but that’s the case in some of our states.

Miscarriage? Face Prison Time For Murder

Government so small it fits into a woman’s uterus.

Think about it. Fight against it, because we’re just one thin line away from Margaret Atwood’s The Handmaid’s Tale.

[Addendum 1: After publishing this post, I found the following link, to the Center for Women Policy Studies’ article entitled Pregnancy Exclusions in State Living Will and Medical Proxy Statutes. I strongly recommend this article if you or your child(ren) are of an age where pregnancy is an issue. Whether you live in one of the five states that allow advanced directives for pregnant women (Maryland, Minnesota, New Jersey, Oklahoma, and Vermont) or not, pay very close attention to your state laws.]

[Addendum 2: MSNBC is reporting that John Peter Smith Hospital has been ordered by a Texas judge to remove Mrs. Muñoz from life support, no later than 5 p.m. CST on Monday, and that her death on November 28th places her outside the legal requirement for maintaining the acknowledged non-viable pregnancy. It is unclear whether the hospital’s administration will follow the judge’s ruling at this time.]

11/25/2009: Here’s an off-the-wall question: Where are the vocal groups that support Death with Dignity?

11/25/2009: Here’s an off-the-wall question: Where are the vocal groups that support Death with Dignity?

[eta No, I don’t mean the musicians. Until today I didn’t know there *were* musicians named Euthanasia!]

Background: In junior high, I took a class on death and dying. I was particularly interested in the subject because of my mother’s illness. I think it’s likely that this class introduced me to the concept of Euthanasia. Somewhere in my hoard of school papers (now down to a measly banker’s box), there might still be a copy of the paper I wrote on the subject.

After my mother’s death in 1978, I paid attention to the news whenever the subject came up, but I wasn’t active in the discussion. It never dawned on me that I would have to confront the reality of long term debilitating illness again in my close family. I have no idea why I thought I was immune, other than that it seemed the problem skipped my father’s generation.

That’s horse manure, of course. His cousin Dick had it, and has likely died since my last contact with the family some eight or nine years ago. It runs through his mother’s side of the family – fully half her siblings died after long term bouts of dementia. And while it seems logical that my grandmother avoided it, one has to wonder about the hallucinations she was suffering in the year or so before her death. or the sanity of a woman in complete denial about how much she can afford to pay and whether she can live on her own with brittle bones and bad asthma. She was hospitalized for a mental imbalance in 1992 while I was dealing with my back surgery, and was gone one year later. It’s the asthma that finally killed her, because she refused to take her medicine. Suicide? Probably. Rational? No idea.

But now, with my father’s sudden and inescapable decline, the word has popped back up in my head again. A quick exploration of the Internet, and it’s clear that the group claiming the name Euthanasia.com is a member of the right-to-life movement. There was such a bill before the Maryland legislature, but it failed. I recall vaguely the matter coming up and being put down again.

In fact, the right to die has only been achieved in four states, with California considering it now.

I have a vague recollection that my paper from Junior High postulated that we are somehow less human because we can feel pity for an animal and are willing to put it to sleep when it’s clearly time (how do we know?!?) but that we can’t allow the same to be true for our fellow humans.

I think you probably know where I stand with this. My father made it all too clear. He told both of us: should he have to be institutionalized because of illness, he didn’t want it dragged out. He wanted the option to opt out.

I suppose it could be said that my sister and father should have moved to the northwestern US to ensure this could happen, but that’s not where they are and now the best we can hope for is to withdraw liquids when it comes time. We have no idea how long this will take. It could be years.

All of a sudden, I’m back in 1976 again, two years before my mother’s actual death from natural causes, the result of complications from her disease and of being bedridden nine years. We’re facing an epidemic in this country as the Boomer generation comes closer to the edge of the abyss. I’m at the tail end of that movement, because my parents waited until late to marry. My father is 31 years older than I am. It’s reasonable to assume he’s been dealing with this disease since at least 2005. The disease snuck up on us. Its affect are devastating to watch and I’m not even there in person to deal with the day-to-day horror of the loss of his intellect.

I suspect it’s a long trip we’ve started. I hope to whatever god is out there that I’m wrong and that the end comes quickly. It’s what he wants.

We’re so enlightened as a society. Why can’t we take the next step?

Comments:

LR:
My experience has been that if you get lucky and your Dad lands In a hospital with physicians with an attitude in line with yours, they can work within the system to prevent things from dragging on. This is especially true if your Dad’s Advance Medical Directive indicates he does not want to be artificially given nutrition if he can’t feed himself. When my Dad was in ICU, nobody there was putting pressure on us to keep his corpse going. After a week we withdrew support and he was allowed to finally die. I’ll hope for things to go well for your Dad.

ML:
A detailed living will can definitely help. Include direction re feeding tubes and suchlike.

Either my mother or I get mail from at least one if not more right-to-die groups. Hemlock society is one of the ones that comes to mind, though I’m pretty sure that’s not the name of the group that was mailing.

:searches hemlock society and finds a bunch of stuff, including http://www.compassionandchoices.org/, whose name rings a bell:

“euthanasia” is rarely used on the pro side of the discussion. The string you want is likely “death with dignity” or perhaps “right to die.”

And I had to read your title multiple times before it finally dawned on me that you weren’t looking for singing groups who tended to sing about the merits of euthanasia.

[edit: http://en.wikipedia.org/wiki/Hemlock_Society ]

LR:
Oh good, it wasn’t just me that thought in terms of singing group first! LOL!!!

Me:
Shows how out of touch I am with the current music scene! LOL!

RB:
I wonder if they cover Bohemian Rhapsody?

Me:
A…ha….ha…ha.

*groan*

RM:
DNR = DO NOT Rescuscitate (sp?) order. You have to have one in place or the hospitals will do “heroic measures”. Having gone through all of the above with various relatives….

TE:
Just wanted to say I am so sorry. It sucks.

I don’t have anything useful to add, other than you know my phone number & email.

Musing About Death…

Musing About Death…

I’ve had this post brewing in the back of my mind since I started listening to Rent (and really, since I saw the movie last fall).

I think my thoughts have solidified enough to write what I’ve been thinking, on and off, over the months.

Warning!!! Serious musings on the value of life, the meaninglessness of death, and other associated issues follow. Some seriously graphic depictions of a chronic illness – of which some of my friends have been diagnosed, are described. Please read at your own risk.

I am 42 years old at the writing of this post. I will be 43 this coming November.

While this may not seem to be a significant birthday to most of you, for me it’s a major milestone.

My mother (born on in 1934, died in 1978), was 43 years old when she finally succumbed to Chronic Progressive (now called Primary Progressive) Multiple Sclerosis.

She was bedridden, unable to do anything for herself, from approximately 1968/69 until her death. Her doctors treated her with cortisone, but it didn’t help and she eventually moved home to be cared for by her parents, including her father (a General Practitioner for his neighborhood).

I was 14.

This is background information, intended to explain why I am suddenly obsessed (I don’t think there’s a better word right now) with listening to the music – and particularly the words – of the soundtrack. It’s not really a music virus. I’m attempting to absorb the incongruity and irony that is Rent. It is a monument to survival in the face of difficult, sometimes horrifying circumstances. And it was written by someone who faced his own final deadline without knowing it.

“No day but today,” indeed.

If one was to investigate why I have taken on so many time-intensive projects, why I have felt the need to commit my self and my time so often and so intensely, one really only has to look at the first three paragraphs, and to listen to the music and the words of Rent to fully understand.

Life is short. It’s an overused cliche and a state of mind all at the same time – a personal philosophy which very often drives my sense of purpose.

It’s impossible to pack everything into a single life. There isn’t enough time in the day, not enough energy in the world. But that simple phrase – no day but today – explains so much about why I find it so utterly offensive that anyone could condone the taking of life (ANY life).

I don’t have answers. I don’t know what to do if someone else takes a life. Is it okay to take that person’s life in exchange? I don’t know. I suppose it’s appropriate to think, in theory, that by taking a life one forfeits the right to keep one’s own, but do any of us have the right to take that life? How can we say that it’s okay to take a life in one case and not okay to take a life in another, depending on circumstances?

Those who speak on behalf of the righteous believe that they have the authority to do as they please, based on their conception of “right” and “law.” I believe there are basic rights and laws that are incontrovertable and not definable by any written work. And yet…

There is the question of abortion. There is the question of capitol punishment. There is the question of justice in the face of an attack on innocent bystanders who happened to get to work too early in the morning and were in the path of incoming airplanes carrying other innocent bystanders. There is the “rescue” of a people oppressed, who then take the opportunity to incite civil war based on religious belief.

How do we reconcile ourselves to allow one of these acts and not another? How can people look at each other and decide, based on belief, that one person should be allowed to live while another should die?

And, in the end, what do we accomplish when we set out to “protect” one life from being taken by another? At what cost?

I’ve been accused of being idealistic. Unrealistic. A pacifist (and that’s apparently an evil thing to some people).

I don’t have answers to these questions, but they are burning me up inside. I am trying to coexist with an increasingly hostile environment. And the only thing that saves me from moving on to something “better” is that I have no clear assurance that there is, in fact, something better. I think there may be something different, but I have no guarantees that this is the case. And I have learned that there is no better purpose to life than to live it here and now.

I can intellectualize life in 40 years. I have extant examples of people who live well into their 90s – even in my own family. But I also have shining examples of extended life gone horribly wrong, too. It shows in the face of my mother-in-law every time we go to visit her in the nursing home. She and my mother (had she lived) would be near the same age. It shows in the vivid descriptions of my friend’s father, who suffers from dementia. It shows in my family history – where we live to old age if we don’t die of cancer, but with dementia, or heart disease, or blindness, or in some other enfeebled state. None of my oldest relatives, save possibly Great Aunt Annie and First Cousin Thrice Removed Harry, maintained useful lives into their 90s.

There is, in fact, no day but today.

So how do I reconcile this knowledge with seeking out life-threatening activities in the name of protection and service? The short answer is, I can’t. I am told that it must be done. Someone has to do it. My response is “why?” All the justification in the world doesn’t seem to make it better, when those who should serve to protect my interests fail to understand what my interests are and how I interpret them.

The Earth is a wonderful land. It truly is. Anyone who has visited the Grand Canyon or the California Redwoods or the wilds of the Adirondack mountains knows what I mean. I can’t speak for other lands – my experience is far too limited, but I can take what I know of North America and extend it globally. And if we don’t start recognizing that what we have is a gift (from God or whatever), and that it and ALL its people with the same respect and reverence, then in the end we will have nothing.

When I see global warming warnings brushed aside in the name of our human importance and our innate right to do as we please, when I hear that we can go to war against a people because we are protecting another people, when I hear that a person may be killed for the $60 someone else thinks is more important than the life of that person, I feel ill.

We will soon be short on doctors. We will lack teachers to teach the people how to save themselves. We will descend into the next Dark Ages as our world heats up. And we will have no one to save when that time comes. It won’t be my children who will see this horrible change, but their children, or their children’s children. A few generations more and the only thing left will be the cockroaches and a few stragglers who will be left to pick up what’s left.

Can we break the cycle? I wish I knew – for the sake of my children. I want them to know a world where everyone is treated the same, regardless of the color of their skin, their religious beliefs, or their last name. I want them to know a dark sky filled with stars. I want them to see a world where people respect each other, help each other. Where one person’s worth is not judged by his bankbook or her DVD collection or the political connections he has.

And for me? I wish I had more time. And if I didn’t that I knew when I was leaving, so that I could plan accordingly.

And that I could do something to make this world better than it is right now.

And that my actions would inspire other people to do the same.

And finally, that nobody would have to experience what I have. But then, I guess people don’t learn unless they have examples, do they?

June 15, 2005: Obviously one Michael trumps another…

June 15, 2005: Obviously one Michael trumps another…

And so, now we know…

Washington Post: Schiavo Autopsy Released

And for all that, we tied up the congress, the court system, and the morals of hundreds of thousands of people who used this poor, doomed woman as a poster child for the injustices of fate.

And now, NPR and PBS…

Thinking Canadian thoughts again… Continue reading “June 15, 2005: Obviously one Michael trumps another…”

April 01, 2005*: Man’s Inhumanity to Man

April 01, 2005*: Man’s Inhumanity to Man

A day after the death of Theresa “Terri” Schindler Schiavo, and on the eve of what may soon be the death of Pope John Paul II, I have finally coalesced all the things I think have been so wrong about what has happened to our government, our judicial system, and our humanity as members of the United States of America as a whole.

It has been bothering me for months, on and off, since Terri Shiavo became the center of media attention and a poster child for the religious right. I couldn’t put a finger on just what it was; why it was a problem for me to watch the news in conjunction with her “life” and now death. But now I have it nailed, and I want to be sure that I am explicit in explaining my views on the subject, because they relate directly to me and how I want to be treated if I ever comes to this.

History

As you may already be aware, my mother died when she was 43 and I was 14. The details, still fuzzy nearly 30 years after, remain that she was a sufferer of Chronic Progressive Multiple Sclerosis, and that she died of complications on April 17, 1978.

What this fact fails to convey is that from the time I was approximately five and a half (a year older than my eldest daughter is right now), my mother was no longer a resident of my house. After long and careful consideration, and based on the medical support available at the time, it became clear to my mother that by moving home to her parents, she was acting in the best interests of her children and her husband, who could not continue to care for her in the way she needed.

I recall the day the ambulance came to take her home to Brooklyn. I don’t know if she drove the whole way there or if they put her on an airplane and transported her that way. I simply remember the day my mom left the house. And that memory, coupled with a few isolated other memories of life before she left, and of life after she moved, are all I have left of her.

But more important to this story are the memories I carry of my mother, being cared for in the basement apartment of my grandparents’ brownstone in Williamsburg, the heart of the Hassidic community of Brooklyn. Grandpa was a general practitioner, practicing for his local community. The equivalent of a country doctor, he cared for his neighbors. A deeply religious, orthodox man, he kept his family close about him for as long as he could. Two sisters lived in apartments above, one around the corner until her husband died. That sister, and my Grandma, cared for my mother full time after she returned to the house she left so early in her life.

I can recall the liver, being cooked and then blended down for my mother to eat. I can recall the smell of the egg salad and of pot roast and roasted chicken. I can recall the baby grand piano in the living room, the feel of a sepia portrait when thinking about that house. There were Hanukkah candles and magazines. There was a big, sturdy bed upstairs in the back of the doctor’s office. And there was my mother, in a rented hospital bed, propped up a little and always very near the bathroom. There was a second twin bed right next to hers, where I think Grandma slept, so that she could be nearby.

And I know that my mother lived this way from the time she moved in (except for a brief period of time when she either could or was still willing to sit in a wheel chair), until the day she died.

My mother received hospice care. It wasn’t given at a facility, but it was still hospice care. Were she to become sick today, it might be possible that she could still carry on with some sort of life, but that’s so unlikely, and such fantasy, that I simply don’t think about it.

Today

What I am on about here is that we can call the act of injecting a lethal dose of morphine a humane way of ending the suffering of a dog or cat, but there are those of us who cannot comprehend using the same procedure to end the life of a human being in a similar circumstance.

We can justify carrying out the death penalty for criminals like Timothy McVeigh by using lethal injections. After all, in effect, we are doing to them what they have done to us. But we can’t in good conscience give our loved ones a painless way out, except in Oregon, under special circumstances, and only until the Supreme Court decides whether it is constitutional to allow the practice to continue. Even mentioning the word Euthanasia causes much unrest and gnashing of teeth.

I say that there is something very wrong with this picture.

Medical directives like living wills have been around for at least the last 30 years. I have had mine filled out since Junior High, but did not do a medical power of attorney until my first surgical procedure in 1992. They have gotten much press in the last two weeks, thanks to Mrs. Shiavo’s situation.

Rest assured. Even if my mother was still, somehow, available in the prison cell of her body, she was not even remotely able to communicate. I firmly believe that there was simply nothing for her but to go off into her head for the nearly nine years she lived in that basement apartment.

I have already made my intentions clear elsewhere, but I am stating for the record here, where it is publicly accessible by anyone, that this is my feeling on the subject:

1. If I ever become incapacitated (unable to communicate, unable to care for myself, unlikely ever to recover from this state), I do not want to be alive.

2. If I ever experience a life-threatening state, I do not want to starve to death. I want as much medication as is necessary to end whatever pain I may be in.

Let me repeat: Do not starve me to death. End my life.

3. Do not bury me – Ensure I am gone (remove my heart or some other medically necessary organ so that I will not wake up), and cremate my body. Dispose of the ashes as you see fit – don’t keep me hanging around in an urn somewhere, waiting to be dusted.

4. Do not have a funeral for me. I presently have no use for clergy, though this may change at some point, and will be much happier if you gave me a party in my honor. Sing songs, tell jokes, read books. Enjoy what I leave behind. And mourn if that’s right, too, but don’t do anything in a church – you’d never be able to pick the right one.

Nothing can be more torture that being forced to see my loved ones and not be able to say to them “I love you.” I know that this must have been my mother’s fate, if she was still there at all, because her ability to speak left her long before she died. Do not put me through that same torture. Let me out.

* Bad timing, but this is not an April Fool’s joke. I am absolutely serious and completely within my right mind as I have written this document.

Theme: Elation by Kaira.