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Monday, October 13, 2008

RE: Life Is Beautiful at the Hospice

posted by on October 13 at 15:37 PM

Some relevant and moving comments on I-1000 from my post about hospice care.

A friend of mine died in hospice from ovarian cancer that spread through her stomach and intestines. Hospice was great for the first half of her decline, always bustling about in the background while we helped our friend self-medicate with marijuana, etc. However, she was really miserable towards the end. The pain was immense for her and all she and the rest of us wanted was for her to pass on quickly. While the hospice workers were amazing people, we wish death with dignity had been an option along with the other care leading up to it.
my grandmother died of a brain tumor caused by metastasized lung cancer. she was under hospice care. this was in VT. she begged and begged and begged for relief—she wanted to go quickly. they best advice the hospice social worker could come up with? she told my grandmother the only way she could speed up the process was to starve herself to death. i was fucking outraged.

i watched my grandmother go from a human being to a pile of bones and skin—unable to do anything in the end but suffer. she couldn’t walk, then she couldn’t manage her bladder/bowels, then she couldn’t feed herself, then she couldn’t speak, and then she couldn’t do anything but look at you. in the end it didn’t look like she could even seen anything—we were unable to discern if she even knew we were there. two months of agony—for her and for my mother who was her primary caregiver. hospice doesn’t do much—they provide drugs and equipment—and once a week for half an hour a nurse comes in and twice a week an aide comes in to bathe the patient (or something like that—change the catheter). it is basically nothing for someone who needs round the clock full time care. it puts an extraordinary amount of emotional and financial pressure on the family.

i currently have a progressive, degenerative neuromuscular disease. if it comes to the point in my life where i am unable to do anything and i need that kind of care—i would prefer i be allowed to die (way before that point, actually). i will not put my family through what they went through with my grandmother. i wouldn’t wish that upon anyone, ever.

A very amazing and vibrant friend of mine in Michigan was asked—begged—by her long-suffering father to help him end is life. His cancer was excruciating and “pain-management” was no-longer effective beyond keeping him a drugged vegetable on a gurney.

They drove to an abandoned car lot in D.C., and at his request and with his blessing she put a bullet in his head. Fearing homicide charges, she then turned the gun on herself. Unsuccessfully. She was in critical condition for weeks, wracked with guilt and fear, to eventually die from the combination of wounds and terrible heartache.

I breakdown and cry for her every time I think of the horrible position she was put in, between the reality of her beloved father’s agony and the blindness of the state.

Please don’t force more people into tragic choices like this. Allow people to make the choice of their own death, with dignity, with care, on their own terms, in peace.

I-1000 doesn’t prescribe lethal-dose.
It permits lethal-dose.
Allows it, not forces it.
Critical difference.

If you don’t want to end your own life with a peaceful lethal dose? Then don’t do it.

But don’t you tell ME what I can and can’t do. Ever. Don’t like what I choose? Then don’t be my friend. My life, my choice. Fuck off.

Please vote YES on I-1000.

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so people are too lazy to click on the comments?

Posted by Bellevue Ave | October 13, 2008 3:44 PM

Too busy watching the dog on a trampoline.

Posted by snakes | October 13, 2008 3:49 PM

@1 and 2, probably don't want to unwittingly stumble on another carnivore-vegan war.

p.s.--I've said it before on other issues and will say it again: please vote yes on I-1000, WA, so we midwesterners will follow your lead in another 10 yrs or so.

Posted by emma's bee | October 13, 2008 3:55 PM

These were incredibly moving, thank you for highlighting them.

Posted by Aislinn | October 13, 2008 3:56 PM

There was an op-ed in the P-I about this today, some doctor saying that medical science has advanced to the point that we keep people alive unnaturally, so there isn't really a "natural" way to die.

So here's my question, and it's honestly just a question, I really have no idea what the answer is: If you accept modern medical care, isn't that the risk you take? If you agree to take modern pharmaceuticals, and undergo modern treatments, aren't you choosing the chance of that unnatural death? But maybe some people are going to die a nasty death anyway?

Posted by Seth | October 13, 2008 3:56 PM

Seth@5: So what's the alternative? Refusing all medical treatment? There's a difference between penicillin and using machines to move the lungs and the heart.

Posted by Dawgson | October 13, 2008 4:04 PM

Nice rhetorical strategy - pick a few out-of-state hospice horror stories to define hospice care as uniformly cruel and thoughtless. How Republican! A properly trained hospice nurse is what you need - not a social worker (no offense). Those hospice nurses really do know about pain mgmt, more so than alot of docs out there.

Posted by jackseattle | October 13, 2008 4:04 PM

Your story made me break down sobbing on the bus last Friday. Hospices can only do so much-- I had to watch my grandfather become a pale imitation of himself in a hospice, and it killed us. I wouldn't deny this option to anyone else, and I don't want anyone denying it to me.

Posted by Jessica | October 13, 2008 4:11 PM

I have seen the horror stories, and they are horrible. The suffering in this world is really terrible.

What I would like here, though, is for proponents of the measure to actually address the concerns that opponents of the measure in its current form (like me) have.

I feel like I repeatedly explain to folks that the possibility of people (in our unjust and nonfunctional health care system) being forced into making a choice they don't really want is real and frightening to me, and I can't vote for the measure until I have some reassurance that terminally ill people WON'T be forced into suicide by lack of money or stingy health insurance companies.

All I get in response is another litany of suffering, and statements that everyone who opposes the bill must be an anti-choice fascist monster.
You know what, I know that people suffer. And it sucks. Can we address the concerns some of us have with the WAY this bill attempts to solve the problem, rather than assuming that opposing this bill means wanting the problem to remain unsolved?

Posted by Thisbe | October 13, 2008 4:14 PM

@7, No one is saying hospice care is uniformly anything, except the people saying it's uniformly appropriate for any and all painful ailments. All I-1000 proposes to be is a choice we don't currently have.

My grandmother spent several months in agony living in a hospice. She was well taken care of, but wished to die. She'd wake up every morning and ask her children if she was dead yet. I doubt she'd have chosen to kill herself if asked, but there's no way to know, since she was never offered that option.

Posted by MacCrocodile | October 13, 2008 4:19 PM

5: No, because modern medicine doesn't cause lymphoma or cystic fibrosis or leukemia or any of the other, wonderful diseases people die from, and some of the time, treating them merely prolongs life while the quality goes south.

The real question, however, is why anyone should have to die a nasty death if they don't want to.

Posted by Max Bell | October 13, 2008 4:24 PM

Word to Thisbe @ 9.

30 years after we create a legal framework for medical suicide, we will be reading horror stories of people "encouraged" into ending their lives by interested parties. Dan and his fellow progressives will be at the vanguard to reform to address the problem their previous reform created, and will be blaming it all on the evil conservatives who aren't willing to share enough of their wealth.

This same script played out over the past 30 years with "de-institutionalization" in place of "death with dignity".

Posted by David Wright | October 13, 2008 4:52 PM

@5 It doesn't have to be an either/or proposition. We can try to do the best we can with the tools we have and the situation modern medicine and modern illness put us in. Passing I-1000 gives terminal patients one more option for how to handle their deaths, should they choose to exercise that option.
Bioethics are incredibly complicated, and I think there is rarely a simply right or wrong answer to anything when it comes to ethics and medicine.
@9 One point I'll make to your concerns is the request for medicine has to be initiated by the patient. It's not valid or legal if it begins from the doctor, insurance company, or anyone else. Also, a lot of what you're saying is that you're afraid that something may sometime go wrong. Well, no one can guarantee that won't happen. As a proponent of the bill, I'm just saying it has the power to do a lot of good for people who are suffering an awful lot.

Posted by Jessica Knapp | October 13, 2008 4:56 PM

@12: So do you see a solution? Or is "death with dignity" an impossibility?

Posted by Dawgson | October 13, 2008 4:58 PM

I think that the most basic human right is to live, obviously. Isn't the corollary of that the right to die?

On a seperate thought, @ #12. "De-institutionalization". Correct me if I'm wrong, but I seen to remember under the Reagan Administration large numbers of previously institutionalized people suddenly being on the street due to massive cuts in spending by Reagan. That wasn't some liberal initiative... Does anyone else remember Seattle in the mid-late eighties? There were literally crazy people on damn near every street corner downtown.

Posted by ballard dude | October 13, 2008 5:02 PM


Actually, I think what I am saying is mostly that we can look at other places where this has been attempted, and we can see problems that have arisen.
(Exhibit A, Oregon; Exhibit B, Netherlands)

The current initiative does not address those problems.

It's not so much that a bunch of bad things might happen, as that when people have done this in other places, certain specific bad things HAVE happened, and I am not on board with this bill unless we can adjust it to try to prevent those bad things.

Posted by Thisbe | October 13, 2008 5:20 PM

Dawgson @ 12: I hope it's not an impossibility, but I don't see an easy solution. If we do have some legal framework, I would hope it would be cleanly seperated from medicine. Maybe we could have "healing doctors" to make you better and seperate "suicide doctors" to help you kill yourself. In practice the most important element is probably that society continues to view the process with a high degree of stigma and suspicion.

Ballard Dude @ 15: Deinstitutionalization was a cause celeb of the left in the 1960s, fueled at the popular level by films like "One Flew Over the Cucuos Nest" and at intellectual level by thinkers like Michel Foucault. The mentally ill were depicted in heroic terms as creative and opressed speaking a kind of truth to power. The idea seemed to be that, if they were released, they would contribute to a less controled, more vibrant, and more diverse society.

A lot of de-institutionalization did happen in the 1980s, but it seems rather odd to blame Reagan: most institutional funding was never at the federal level, a lost of de-institutionalization had already happened in the 1970s, and most of those released were moved into "community-based" care like halfway houses. Yes, that made them more visible to society at large, but that was the left's goal.

Posted by David Wright | October 13, 2008 5:28 PM

I definitely did *not* get the impression that anyone was saying hospice care is bad care. The issue is that there comes a point in many illnesses where *no* care is good enough to make a person able to live comfortably. Of course there need to be some sort of safe guards to make sure people aren't "encouraged" to suicide. Even so, I am 100% for allowing people to choose Death with Dignity. The name of the proposal says it.

I find it interesting to compare anti-abortion arguments with the anti-Death with Dignity argument. They don't want to allow abortions because we have to protect a "child" that can't make its own decision? But they don't want to allow adults to make the decision for themselves? (yes I know this only applies to some of the 'anti-' arguments)

Posted by Amy | October 13, 2008 7:12 PM


Yeah, I'm sure Foucault had a huge impact on American domestic policy.

It's far more likely that psychiatrists started to realize the complexity of mental illness and the subjectivity of how psychiatrists classify the mentally ill from the sane. Institutionalizing a person for life when he or she is no threat to him/herself or anyone else is unacceptable. Or don't you believe in civil liberties?

Posted by keshmeshi | October 13, 2008 7:50 PM

Keshmeshi @ 19: Foucault was actually pretty widely read among psyciatrists in the 60s. But in the end it really doesn't matter whether the ultimate influencers were pop movies, teach-ins, post-modern philosophers, or civil libertarians. A consensus emerged on the left that the world would be a more just place if we let crazy people roam among us, and thanks to that consensus we now have a lot of crazy people roaming among us.

Posted by David Wright | October 13, 2008 10:39 PM

I have seen end-of-life suffering; my grandfather achieved his own "death with dignity" by starving himself. Physician-assisted suicide is also an option I would want for myself. However, I must agree with Thisbe that the potential for insurance companies to abuse legal physician-assisted suicide is frightening. We must remember that insurance companies are not driven by ethics, but by profits. The number of people and treatments they already refuse to cover because they are too costly is alarming. A bottle of pills is far cheaper than the pharmaceuticals and professional staff needed to make someone "comfortable" in their last weeks of life. Refusal by the insurance companies to cover hospice care in favor of physician assisted suicide would make suicide the "responsible" option for people unwilling to bankrupt their families. Even though the legislation will require the patient to initiate the request for assistance, undue financial pressure could force their hand. Then where does it stop? It would definitely be more cost effective to refuse cancer treatment to someone with a long shot at recovery because left alone for a few months they'll be sick enough to ask for their barbiturate overdose please. What about late-stage care for other degenerative diseases? Especially today, when people are more scared than ever about losing their jobs and their benefits it is imperative that hospice care remain a viable choice for everyone, ideally including the uninsured, not just the wealthy, or those with gold-plated insurance. My fear is that legalizing the choice of assisted suicide will essentially remove any other choice for end-of-life care for many people, making "choice" an empty sentiment. Physician-assisted suicide is an option I think we need, but it must be accompanied by, or immediately followed by, laws to ensure that insurance companies do not exploit it for their own gains, and to make sure that uninsured, and often poor, individuals do not see euthanasia as their only fiscally sound option.

Posted by Gwyn | October 14, 2008 8:37 AM

i find it very interesting that the arguments against (or 'opposed for concern of abuse') centers around what *insurance companies* are likely to do with the law, not what people themselves might do with it - yet the proposed action is simply to deny people civil liberties. what? are we that uncreative in our ability to answer a concern, or are we cowed by the iron fist of commerce??

yes, the abortion arguments are relevant because they share similar elements: life and death, the potential for pressure, the vulnerability of the central figure who may not be in the best position to resist such pressure. it's useful to draw parallels at times. i wish the abortion debate hysteria hadn't made it in, though. 'let's deny people a civil liberty based on the fear of what they may do with it.'

@9, @12, @21 - if what you're worried about is what *insurance companies* will do to people, what is so complex about addressing that concern? especially in light of the fact, as #21 points out, that insurance companies exist to make a profit and not to serve, which unfairly slants coverage to low cost rather than best effect. REGULATE THE INSURANCE INDUSTRY.

it is unjust, as a matter of public policy, to limit the control people have over their own lives and deaths based only on fear of what they will do with that choice. if you're afraid of pressure, address that. everyone deserves to have control over their bodies, lives, and at the end, their deaths. everyone, without exception.

finally, i'd like to point out that the insurance industry doesn't make any money on the dead. i wonder if our fear is misplaced entirely, here. if you're still getting treated, you're still generating the claims that keep this industry alive. are we sure we should fear them so much? maybe we can panic if we see money for this measure rolling in from the undertakers instead?

Posted by happy hedonist | October 15, 2008 12:29 PM

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