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Monday, October 13, 2008

Life Is Beautiful at the Hospice

posted by on October 13 at 13:33 PM

Opponents of I-1000, the death with dignity initiative, argue that physician-assisted suicide* is unnecessary because we have hospices. And everything is beautiful at the hospice—your pain is medicated away and there are lovely macrame wall-hangings to take your mind off your imminent demise. From the “NO I-1000” campaign’s website:

The people of Washington… can already choose to receive good end-of-life and hospice care, excellent pain control, and the relief of discomfort. The people of Washington need quality end-of-life care, not the lethal drug overdose I-1000 prescribes.

Death is always beautiful and peaceful at the hospice—and once you’re in a hospice, why, you won’t want or need the lethal dose of medication that I-1000 would allow your doctor to prescribe you (so long as you had less than six months to live, asked for it twice, once in writing, and a second doctor signed off on it), so what’s the point of voting for that silly death-with-dignity initiative anyway?

Because not everyone’s pain can be treated—not even in a hospice. From today’s front-page Seattle Times story on Oregon’s experience with physician-assisted suicide:

Annual state reports note that 85 percent of the physician-assisted deaths in Oregon have involved various forms of cancers. The most frequently cited end-of-life concerns were losing autonomy, dignity, control of body functions and the ability to enjoy life. The vast majority of the patients also are enrolled in hospice care.

[Tony] Miller is another independent soul who longs to be in Cuernvaca, Mexico, where he spent the last six years teaching history. There, he was diagnosed with severe prostate cancer and decided to leave friends behind to return to the United States for treatment in Maryland. He then made his move to Oregon.

Miller was deeply affected by the 1999 cancer death of his younger brother, who despite hospice care, still suffered through great pain at the end. Miller hopes that the Death with Dignity Act can help him avoid a similar fate.

Simply being in a hospice, or having access to hospice care (some people would rather die at home), won’t necessarily spare you an agonizing, protracted death. If it did, people living and dying in hospices in Oregon wouldn’t be asking for these drugs, and Tony Miller’s brother would not have died in agony in a hospice in 1999. Sometimes pain cannot be controlled; sometimes discomfort cannot be relieved. The option of self-administering a fatal dose of drugs as you lay dying is not antithetical to quality end-of-life care, it is quality end-of-life care.

RSS icon Comments

1

Like the other great choice -vs- right-to-life debate, it all seems to boil down to a disagreement between people who think they should have the last word in decisions regarding their own body and those who think the state should.

Posted by flamingbanjo | October 13, 2008 1:38 PM
2

Hospice is great, and I-1000 isn't a replacement for it. They go together. Most who choose death with dignity are already mainstreamed in a system that is caring for their needs; i-1000 means having a choice, that's all.

Posted by friend of the bride | October 13, 2008 1:42 PM
3

Someone close to me died of pancreatic cancer, and he had hospice care in his home. He died a slow, agonizing, scary death and all of the people who cared for him were there praying that he could just die to end the suffering.

We give our animals a painless death when they can no longer enjoy life due to illness or injury, why can't we give each other that option as well?

Posted by Carollani | October 13, 2008 1:42 PM
4

Hospice is great, and I-1000 isn't a replacement for it. They go together. Most who choose death with dignity are already mainstreamed in a system that is caring for their needs; i-1000 means having a choice, that's all.

Posted by friend of the bride | October 13, 2008 1:42 PM
5

Dan, as you stated so well the other day, The No on I-1000 folks don't want to have death with dignity for themselves and we're all for what they want, with regard to self. But why the hell do they insist on having everyone make the same choice as they? What about this concept is so hard for them to grasp? And what ever became of the "God gave us free will" stance? Why are they standing in the way of what God gave us? I think God shall smite them. Amen.

Posted by Sargon Bighorn | October 13, 2008 1:43 PM
6


"Assisted" suicide is not necessary because we have plenty of railroad crossings and Burlington Northern diesels.

Posted by John Bailo | October 13, 2008 1:48 PM
7

Sure, but only as long as you can still wheel yourself in front of a train. Why withhold the right to die from those no longer ambulatory?

Posted by superyeadon | October 13, 2008 1:54 PM
8

I lost my partner of two decades a couple of years back. At one point, he begged me to help him end it, and all I could say was "I'll do whatever you ask, but know that if I'm caught I'll lose my medical license and never practice again." Fortunately, our hospice social worker and nurse both got involved, and they moved him to inpatient, sedated him and he was gone in just over a week, safely and legally.

I'm just to this day haunted by whether or not he was in pain. Being sedated, he couldn't have told me if he was.

We need death with dignity laws. Not having them caused us a great deal of problems that we may have otherwise avoided.

Posted by Just...wow. | October 13, 2008 1:55 PM
9

I spent last week by my grandfather's bedside -- He'd been in a coma, came out of it miraculously, and then asked to be taken off all life support and denied any further treatment. He'd had a good 85 active years so it was impossible to begrudge his wishes.

This all happened Tuesday. He's spent the last six days on morphine slowly losing coherence and consciousness but not passing away.

I had always assumed that once life support ended, death would quickly follow. I know better now. I-1000 is incredibly important to save patients and their family's untold suffering.

Posted by Dawgson | October 13, 2008 2:00 PM
10

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.

Posted by xina | October 13, 2008 2:08 PM
11

why is a progressive like sheen opposing this?

Posted by SeMe | October 13, 2008 2:24 PM
12

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.

Posted by Bemaha | October 13, 2008 2:33 PM
13

SeMe, why do you want to pigeon hole people with labels?

Posted by Bellevue Ave | October 13, 2008 2:41 PM
14

#11: Martin Sheen is a Catholic, and evidently one who buys into the Pope's declaration about "god" picking the time one dies. Absolutely irrational crap.
I've seen a number of friends and relatives die, some fortunate enough to go quickly, others in agony. How the bloody hell religious people can think that's the way their god want them to go is unfathomable to me.
One friend's mother took a long time to die. My friend said the nursing home was making good money off her lingering death.
Physicians have to take the Hippocratic Oath, which binds them to "do no harm." Watch some one die agonizingly, and ask if that is harm or not.

Posted by eliza | October 13, 2008 3:00 PM
15

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.

Posted by treacle | October 13, 2008 3:18 PM
16

'suicide*'?

What's the *?

Posted by Ben | October 13, 2008 3:29 PM
17

Jesus.

These stories need to get out to a broader audience. Nobody sees them but us. Nobody counts the cost. Nobody else cares. It's not their lives.

We share them with each other because we've been there. WE'RE not the ones that need to hear them, though.

Posted by Just...wow. | October 13, 2008 3:33 PM
18

#7: good point. Perhaps a special Metro shuttle could be arranged.

Posted by John Bailo | October 13, 2008 3:51 PM
19

You know, there's some serious mischaracterization of opposition going on here.

I'll step up: I am voting no on I-1000.

It's hard, because I do believe that people ought to have sovereign choice over their own bodies, and I do believe that death is often preferable to suffering.
But I don't think that this is a good law, and I really hope it doesn't pass.

I will leave aside all of the ethical questions that come with allowing one of the witnesses to the uncoerced nature of the choice to commit suicide to be an heir to the suiciding person.
Most of my objection comes from the completely broken nature of our health care system. If someone is lucky enough to be insured, it is possible that the insurance company would refuse to cover palliative care if suicide were an option. And for the uninsured, the inability to pay (or unwillingness to run through savings that would otherwise be left to the spouse or children) can be a major coercive factor.

Look, I work in veterinary medicine. I know, first hand, what happens when a loved animal is old and sick and caring for it until a natural death would be too expensive or too much work. People choose convenience, and I do not think we should risk allowing that to happen to people.

In my opinion, we need to work FIRST on making sure that everyone has access to adequate health care. THEN, when the system is just and functional, we can work on allowing doctors to kill their patients.

(Let's not get confused about "choice", by the way - we can each and every one of us choose death any time, any day. This law is about wanting to choose to have someone else help us, which is to me both less obviously a fundamental right and more worrisome.)

Posted by Thisbe | October 13, 2008 3:58 PM
20

I'm with Thisbe. Too much of a realist to trust the HMOs and Insurance Co

Posted by jackseattle | October 13, 2008 4:11 PM
21

@19 If you are so crippled by pain and illness that you can barely move, choosing death is not always an option. You can't simply commit suicide the same way an able-bodied person could. Thus, the necessity of the lethal dose of barbiturates. Plus, wouldn't you rather see a terminally ill person taking a lethal dose of drugs than having to put a gun to their mouth or wheel themselves in front of a train? Geesh!
Also, I think the way insurance companies handle human beings is going to be substantially different than the way they handle animals. It's a lot different to say we won't pay for palliative care for your pet than to say we won't pay for it for you, the human being. I understand your concern, but I just don't think the analogy between pet care and human care is apt. I mean, we regularly euthanize pets as a matter of accepted behavior.
I think we have to pass this law as part of compassionate care of the dying. Medical advances have put us in a position where death sometimes drags on much longer than it is naturally meant to, and in sometimes very painful ways. I-1000 will give residents in Washington autonomy over the end of their life and a way to cut off some of the pain that comes with it.

Posted by Jessica | October 13, 2008 4:11 PM
22

My Mom died like a wounded animal. She had enough insurance and a metatastized cancer that went to her brain. Given only three months to live, stage IV and so on, she managed 11 months. I was her primary care giver, her eldest daughter, at 41, the last week of her life, May of 1998, to this day, makes me whimper and shudder. She fell, out of bed trying to get to the bathroom one morning, day after Mother's Day. Busted up three vertebrae, ended up in the hospital, under her own written living will, no water or food till she died. She wanted to die under hospice care at home. It just didn't go that way. Pain management? Palliative care-keeping the 'patient' comfortable. It was NOT a comfortable death, NOT pain free or even relatively pain free, nor was it quiet or spiritual or anything like you might hope for, as I loved my Mom madly. It was downright, gruesome. In the end, my brothers and I waited for her heart to stop, which seemed to go on, forever.

After Mom was diagnosed, she was lucid enough to ask my brother, only once, if it ever came to it, too much pain, too long, would he? He said he couldn't. And neither could I. But that is what she asked of us. Now, I understand what she was asking. Not to be killed, but to let go, in a way that wasn't like what we bear witness to. That last week in the hospital, she suffered while her organs continued to shut down, even with morphine, which was given in increments and direction according to the 'law.' Whatever that meant.

I would have baptized her in morphine if I'd have known it would have given her what she desired all along, to die with 'dignity', her own choice.

Do any of us want to be in that position, teetering between madness from knowing the one you love the hardest is dying slow and in excruciating pain, and the freedom to allow that last breath to be taken and let out, for the heart to quit, for one's own choosing. The act of dying and the death of the body isn't a testament to 'Gods' power over us. Its the final act of living a life in a body, that no one escapes. I so wish I would have had the legal freedom to help my Mom, do as she'd first requested.

The hospice nurses that did help Mom and me? Love them and wish them peace, forever. And Mom, R.I.P., from your daughter, with love.

Posted by As Usual | October 13, 2008 4:16 PM
23

We're not talking about your dog dying.

We're talking about another human being dying, and you have the power to help or stop the suffering.

It's insulting that you even dare to make the comparison.

Posted by Just...wow | October 13, 2008 4:35 PM
24

@19/20: I feel like this is a slippery slope argument. You're reaching at straws. Your use of the word "kill" is particularly telling.

Posted by Dawgson | October 13, 2008 4:52 PM
25

You know, @23, I'm sorry that you are insulted, but there's not really any reason to be.
An interesting thing that I have noticed is that you can tell a lot about how people will treat other people by the way they treat animals under their care. A lot of people, in fact, treat their elderly relatives in a fashion I would not find acceptable for treating a dog. I am not sure why that would be insulting, but again, certainly no insult to anyone was intended.

@21, you have more faith in our health care system than is warranted based on past behavior. Take a look at what happens in Oregon; we can learn from the example of those who have gone before, and we find that yes, insurance companies DO steer patients towards unwanted suicide when the other treatment options are too expensive.
Unless the law can be amended to (among other things) fix that problem, I just can't vote for it.

Posted by Thisbe | October 13, 2008 5:00 PM
26

@25: What would that amendment look like?

You said you work in veterinary medicine... where does your knowledge come from? Are you part of some organization which does advocacy in this arena?

I'm curious.

Posted by Dawgson | October 13, 2008 5:09 PM
27

Nope, no organization.
Just a Slog reader who is not going to vote for I-1000, and was starting to feel a little sad about being lumped in with all the anti-choice crazies.

I mean, I read the bill with great thoroughness, because ideologically I want to support it. People are sovereign in their own bodies, or should be.

I think the amendment would need to include language that prohibits insurance companies from covering "self-administered life-ending medication" to the exclusion of covering treatment and/or palliative care.
It's probably not a very difficult amendment, but it's not in there.

However, even that doesn't really address the root of the problem, which is that the uninsured would still be pressured by finances into suicide.

There are some other issues that I have with the whole idea, but that's really the big one. The short answer is that I think we need to fix our health care system FIRST, so that everyone has access to adequate care including the best we have to offer in palliative care, and THEN bring up this issue again.

Posted by Thisbe | October 13, 2008 5:17 PM
28

What I want to know is how adding this option increases pressure on the dying to kill themselves? If they are a burden, their families could be pressuring them right now. I-1000 doesn't change that one iota.

Hospice care isn't everywhere in Washington. Whatcom County for instance only has in home hospice. Meaning they send a nurse out twice a week to provide equipment and advice and drugs.

Some diseases leave you unable to end your life on your own. ALS for instance. It's also impossible to make an ALS patient comfortable at end of life without large amounts of drugs that dull your head.

Posted by King Rat | October 13, 2008 7:33 PM
29

It increases pressure on the dying to kill themselves by making it an option that doesn't disrupt any life insurance benefits or bequests to survivors, and is "medical care" the cost of which can be covered by insurance.

I am not as worried as are some about pressure from family members. I am worried about financial and logistical pressure, specifically from insurance companies and the providers of health care to the low-income uninsured.
This is not a hypothetical; we just have to look at what is happening in places (Hi, Oregon!) where they have already done this, and see that it does happen that people are financially pressured towards suicide.

That is unethical, and there is no reason on earth why we cannot FIX this legislation so that the problem is not there. THIS bill is not a good one - we need a better one, and I'm not voting for a bad bill just because it purports to do something that I support ideologically.
There is not such a big hurry, and I doubt this is the last time we'll have the opportunity to address this issue as voters. I'll wait until there's legislation on the ballot I can actually support, rather than voting for something because I agree with the name, regardless of deficit in actual content.

Posted by Thisbe | October 13, 2008 8:16 PM
30

There are some misconceptions about hospice. In our area, there are actually only two "inpatient" hospices, Bailey Boushay (which is also a licensed nursing home) and Evergreen. Most hospice services are in-home, or most frequently in-nursing home. That's right, many people have to go to a nursing home to do hospice, because they need 24 hour care that they can't get at home. There are rarely openings at Bailey Boushay or Evergreen, which are much nicer than your typical nursing home. Most people do NOT have good associations with nursing homes, and while there are many very good ones in the area, there are also many that are crap. So keep that in mind when talking about hospice. By the way, I'm a hospital social worker so have some experience in the area.

Posted by Hospice | October 13, 2008 8:36 PM
31

I just read your article on I-1000 in the paper and was deeply moved by it. In that article and here, your arguments are precise and direct, while your personal experience is deeply moving. Keep up the good fight, Dan, and I'm sorry again for your loss.

Posted by EmilyP | October 14, 2008 8:47 AM

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