eub | thinking about I-1000

thinking about I-1000

I've filled out all of my ballot except for one bubble. That's I-1000, the assisted-suicide initiative. I'm deeply conflicted about I-1000, and looking for other people's thoughts on it.

I am definitely in favor of everyone's right to control their medical care, and to die without suffering. Everyone deserves effective palliative care, and effective control of pain and suffering, even if that control hastens their death. This is the medically and legally accepted standard, and if you aren't getting it, that's poor medical or insurance practice that ought to be fixed. If you kill yourself because you're not getting adequate care, I think it's a damned shame. (And I do have some concern that if the medical/insurance system has that "out", it will tend less to be fixed.)

Still, all of that only covers present suffering. People may want to end their lives for other reasons, like future suffering, or wanting to control how and where they die, or knowing they'll lose their mental competence to decide later. I am fundamentally agreed on your right to kill yourself (whether you're terminal or not, IMO) if that's your free and informed choice.

But I'm not convinced I-1000 does a good job on free and informed choice. Here are my concerns:

The economic conflict of interest:
Your insurance company makes more money if you die before receiving expensive treatment. Now, it's not obvious to me how they'd have a ton of pull in this system -- the worst I can see immediately is to make lethal drugs and consultations covered 100% and no copay. Which is despicable, but not going to kill a lot of people all else being equal. But it still worries me to have this incentive present.

Whether the patient appreciates their other choices:
The doctor prescribing the lethal drugs is required by I-1000 to inform the patient of alternatives, which I presume includes palliative care, etc. But are they any good at this? First, the patient may be distraught, overwhelmed by their prognosis, may have seen a parent die suffering in a hospital before the hospice existed in this country. Negotiating this is a serious job of counseling, and the prescribing doctor need have no training or skills in that. Second, the *doctor* doesn't necessarily appreciate the other choices. If they don't do end-of-life care themselves, and if they haven't been reading up on palliative care, how can they communicate the options concretely and persuasively, beyond flimsy handwaving? Any doctor either should have the counseling skills and the palliative-care knowledge, or should know they don't, but... there are imperfect doctors.

(Oregon has a similar requirement of informed choice. Hendin and Foley's excerpt of a transcript of one physician's conversation is disturbing. (Yes, they selected it to be, but still.) See below the cut.)

By the way, one possible concern that doesn't seem to have played out in Oregon is that assisted suicide hasn't cut into delivery of palliative care. There just aren't enough exercises of assisted suicide to show up in the numbers, for one thing. Also, most exercises are by people who *are* in hospice care. (Which I would like to understand better -- is there anything lacking in their care, or is this an argument that hospice care in itself just doesn't offer people control they want over their own death?)

Whether the patient is in a limiting mental state:
The prescribing doctor has to certify that the patient is competent, and a consulting doctor confirms this. But again, are they any good at it? As far as I know they are not required to have any psychiatric skills whatsoever. They can be nephrologists. And they don't have to have known the patient previously. And are they trying to make this decision based just on an office visit? And to separate "depression" from "has been given six months to live"? To me it seems very difficult, under these conditions, to pick up when a patient may intellectually know all about their options but not be in a position to make balanced emotional valuations of them.

(I was hoping that Werth and Wineberg would provide some refutation of this concern, but their attempt is pretty weak. See below.)

Tempering all of the above, in terms of outcome there's no point in building infinitely high barriers to uninformed or ill-judged assisted suicide. For the assisted-suicide system to turn someone down is no guarantee they won't do it themselves.

If I were writing the law, I think I'd say:

The prescribing doctor is a palliative-care specialist. (I think this mostly-ensures they know how to counsel about death and choices.)
Consultation with someone with a certain level of expertise in psychiatric evaluation.
If either of these says no, their reasons are made available to the next one the patient may go to.
And I'd think about balancing patient privacy with possible record-keeping to tell whether the system is failing; I'm not satisfied with Oregon's record-keeping despite Werth and Wineberg's defense.

But I didn't write I-1000. So here we have it, and is it good enough that I should vote for it? If you read this far, thoughts on all this?

Also a couple of concrete questions, if anyone knows:
Does WA Basic Health have good hospice coverage and palliative care coverage?
How about Medicare and Medicaid?

Hendin and Foley, Physician-assisted Suicide in Oregon: A Medical Perspective. The authors have been anti-assisted-suicide for years, and they're far from coming in preconceptionless to evaluate Oregon's law. That said, some of their arguments are hard for me to set aside.

The quote on informed choice:

[Reagan]: There is, of course all sorts of hospice support that is available to you. There is, of course, chemotherapy that is available that may or may not have any effect, not in curing your cancer, but perhaps in lengthening your life to some extent. And there’s also available a hormone which you were offered before by the oncologist—tamoxifen—which is not really chemotherapy, but would also have some possibility of slowing or stopping the course of the disease for some period of time.

[Helen]: Yes, I didn’t want to take that.

[Reagan]: All right, OK, that’s pretty much what you need to understand.

Werth and Wineberg, A Critical Analysis of Criticisms of the Oregon Death With Dignity Act. I looked for counterweights to Hendin and Foley (I wish some search engine had better sentiment analysis tools for this kind of search) and this is the best I did. See also the other links on http://yeson1000.org/default.aspx?ID=54 .

The quote on assessing patients' mental state:

However, the research conducted in Oregon with individuals requesting medication under the Act demonstrates that clinical depression is not a major factor in requests for medication and, if present, it could be detected and the depressed individual screened out of the process. For example, a survey of Oregon physicians who had experience with the ODWDA (Ganzini et al., 2000) found that 17% of the persons requesting medication had had "a mental disorder such as depression which impaired his/her judgment." None of those patients was given a prescription under the Act.

Which tells us nothing about these physicians' competence to diagnose depression.

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I'm most concerned about insurance companies not covering treatments in cases where physician-assisted suicide is an option. I think so long as we have a for-profit healthcare system I-1000 won't work without all loopholes being closed.

I have been conflicted about it too, and for many of the reasons you cite.

I talked to a friend with experience in health care law, and the thing she brought out is that she doesn't trust the current health-care world with these decisions.

I also disagree with your 'free and informed choice to kill oneself', though I don't know how to articulate that or what I mean by 'disagree with'. I guess, it's impossible to have an informed choice, since there is disagreement on what happens after death, and no one knows how their death will affect those around them. Plus depression is the main reason people kill themselves, and that's currently considered a treatable condition.

When it comes down to it, I will have to vote NO and instead support the idea of very very good palliative care, with access to very good pain control, as many comfort measures as possible, and clear communication with patients and next-of-kin on what measures should be taken.

On the 'most people are in hospice care' bit: people in general get put on hospice (which can be as simple as 'a nurse visiting the house once a week' or much more elaborate) when they have 6 months or less to live. I think most people who want to die are probably already negotiating with their hospice nurses, ie, asking "So what combination of drugs would I want to avoid if I need to keep breathing" etc.

I guess, it's impossible to have an informed choice, since there is disagreement on what happens after death, and no one knows how their death will affect those around them.

I see what you're saying. I guess I don't feel that these are so different in kind for suicide than for other irrevocable actions that suicide is never a choice one could rightly make.

Plus depression is the main reason people kill themselves, and that's currently considered a treatable condition.

Yes, I would want to exclude that as a reason.

Right, having a baby vs having an abortion vs giving a baby up for adoption are all (to degrees) irrevocable and we can't know the effect, and I think people have the right to continue to make those decisions.

Like I said, I'm conflicted too. It's a difficult issue.

I had similar concerns about the economics of end-of-life care, and wound up voting yes on 1000.

The way I see it, if we set up a system where financial concerns will potentially steer you away from standard palliative care, we've already done it wrong. Whether we should allow terminally ill patients to opt out with a cheap suicide, or force them to fill their last days with stress over whether or not their heirs will be stuck with an unmanageable bill, is the wrong question - this needs to be fixed at a higher level of policy.

But if we're going to go around handing people crappy choices, I don't see any reason why we shouldn't let them make whichever crappy choice they like best.

It sounds like you're saying roughly: once it's broken, this won't make it brokener. But mightn't it?

You mean, will it reduce insurance coverage for palliative care? Can't think of many other ways to break the system more than it's already broke.

Under I-1000 an individual's decision about assisted suicide is not supposed to affect their insurance rates or coverage one way or the other. My knowledge of the regulatory environment in WA that would prevent companies from deciding to reduce coverage on all options but suicide is pretty hazy... but AFAIK that hasn't happened in Oregon. If it does happen here, I'm sure it would be very easy to find the political will to patch up the law.

I'm actually more bothered by the two non-insurance-related concerns than by the insurance one. Because realistically, I don't know how effectively insurance companies could be evil on this, and if they do, as you say, it would be visible and fixable.

Man, I thought I was the only one who was concerned about conflict-of-interest in physician-assisted suicide.

But then, I'm also the nutcase who wonders whether its a good idea to announce your organ donor status for fear that rich people in need of organ transplants will arrange car accidents for you.

note...parts of this are not for the squeamish.

My stance on I-1000 is based on a hypothetical variant on what I've actually been through. In 1997, I was hospitalized, suffering from ulcerative colitis (UC), and no longer able to keep any food down, not even the medication to treat the UC. For the first two weeks or so, they attempted to treat my condition with a few different IV medications. Nothing was working. One day, I was in a lot more pain than the previous day. I had lost weight (down to around 110 at this point), Sitting on a wheelchair to be brought to a different part of the hospital, with an extra pillow for padding, was painful, due to the lack of butt padding, weak back muscles to hold me up straight for more than a few minutes, and my swollen colon. I honestly felt like I was just going to keep losing weight and the level of pain was going to continue to grow until I died in the hospital. In that moment, while I wouldn't have been ready to ask about assisted suicide for myself, it was a very big "A-hah!" moment for me in understanding why others might want to.

There were two medical options available which hadn't been tried yet. One was an experimental treatment that was in the process of getting FDA approval. The other was to have my colon removed, which is exactly what happened, on Friday, two days later, even though this particular hospital generally avoided non-emergency surgeries Friday-Sunday.

If neither of those options were available, my only choice would have been to wait there in the hospital, for my colon to burst. It probably would have taken about a week, with the pain getting more intense. When that happened, I'd have massive internal bleeding, and I'd also have stuff from my digestive tract in my internal cavities between organs and probably managing to make it into my blood. In addition to all of the direct damage, internal infections would be nearly certain. If I didn't die in several hours from the blood loss, my life would probably be very miserable for quite a while.

For the sake of discussion, pretend that death (either in hours or weeks) would be near certain if my colon ruptured. (That may actually be true; I don't know.) That's not how I'd want to go. Oddly enough, I-1000 wouldn't help me; the lag time between starting the process and actually receiving the prescription would be too long. It does make me feel pretty strongly that we should have some process for assisted suicide, even if the exact details wouldn't have helped the scenario I can easily imagine.

That's not to say that emotions & depression don't factor in. After the surgery was actually more painful, because of the large incision and the problems they had finding an effective painkiller for me. However, my brain processed that pain very differently because I was on a clear & obvious path to getting better.

FWIW, I would back your modifications to the law (which the state legislature can easily do after 2 years, but not before then), with the slight tweak on #1, where one of the two doctors to agree that an individual patient's case fits the requirements for I-1000 has to have those extra qualifications, but not necessarily the prescribing one. (I'd want the other one to be a specialist in whatever condition is causing the less-than-six-months-to-live diagnosis.) I'd also want to tweak things a bit so in 10 years, it'll be easier to have enough data to look back and evaluate whether the process is actually working how we want it to.

I don't have a great response to your point about physicians diagnosing depression. My personal experience has also been that doctors are pretty quick to bring in other specialists to help them out outside their areas of competence, though not perfect. I'd also hope/expect that companies offering malpractice insurance would demand that physicians have an evaluation by a psychiatrist or psychologist instead of doing their own assessment there, even though the law doesn't require it.

I'd much rather we adopt a system that seems to be working for Oregon, possibly tweaking it 2-3 years from now, than to turn down I-1000, sending a message that assisted suicide shouldn't be an option in any form.

It does make me feel pretty strongly that we should have some process for assisted suicide

I do too, though I haven't had any experience like yours.

Do you think your hypothetically-terminal scenario would be addressed by good palliative care? Maybe I'm being optimistic, but I think they should be able to control pain in that scenario, once you have a week to live and nobody is really concerned about respiratory depression from opioids.

I agree with your tweak to my tweak.

Putting this into action with the weakness in data-gathering bothers me. I guess I could accept the first two years as a black box and lobby for changes after that.

I am also not a lawyer, but my reading of the "good faith" clause is that malpractice insurance companies could not require that.

Discussion of sending a message in comment below.

From my experience with grandparents dying of cancer, sometimes the only way to control pain is to basically knock the person insensate with morphine - and it can be difficult to tell whether it's working, or whether it has merely prevented the person from expressing pain in a way that anyone on the outside can recognize.

This is really where abstract ideas of dignity come into play. Even if the morphine quasi-coma is not painful, some people would prefer to die with their wits about them.

Yeah. I'm pretty sure there are situations where assisted suicide might be what I'd want myself.

Do you think your hypothetically-terminal scenario would be addressed by good palliative care? That's a valid point. I honestly don't know, but my best guess is "probably."

The data-gathering weaknesses do bother me some too.

Another point that occurred to me midday is that this is likely already going on now, secretly, but doctors are just making up criteria because there aren't any preset criteria to go by. So, if I-1000 passes, I'd expect that the rate of assisted suicides would increase, but probably not dramatically, and that its application would get more uniform, simply because providers who were somehow assisting patients to suicide would now have a clear guideline to work with, and those who were assisting patients to suicide will likely follow it instead of ignoring the current illegality of assisted suicide.

So, even in the absence of good reporting, I'd say that the greater uniformity is a win.

I read the good faith clause and I don't think any part of it constrains malpractice-insurance companies or otherwise makes any mention of the relationship behind a malpractice-insurance contract. It constrains a lot of other parties though.

I agree word-for-word with

yami_mcmoots' comment. I agree that the law is flawed, but I think it is better than not having the law at all. Once 1000 is in place, the legislature can adjust it as needed to curb the worrisome abuses and loopholes.

To me, and I see how some will disagree, this is a right that falls in the same category as abortion. It should never be a requirement; it should always be an option; it should always have alternative choices. Many people have moral repugnance toward such treatments, but they can always choose not to do receive those treatments themselves. Person A receiving the treatment does not harm Person B who is against it. Yes, there is a potential for insurance companies to make it financially attractive to take this route, but they certainly cannot limit a patient to that option especially when the patient's morals are against it. Physicians are also supposed to treat people is such situations without factoring in finances, though I see how it still biases many.

One thing to note about the diagnosis of clinical depression: the DSM-IV-TR (the basis of diagnosis currently used in the US) specifically limits cases where the depression began as a result of negative life events such as bereavement or the diagnosis of a terminal illness or other events where sadness is expected; a person must experience sadness and other symptoms of depression well beyond the normal grief periods (usually 2-6 months, depending on the event) to be properly diagnosed as being clinically depressed. The 17% quoted in the survey is similar to the incidence of "mental disorder such as depression" in the general population.

This of course doesn't mean such doctors doing the diagnosis will be informed of the proper diagnostic criteria, though it is required teaching in most if not all US medical school curricula and most physician career paths include a psychiatric rotation. However, I-1000 does requires them to not do the diagnosis themselves. I-1000, Sec 6 states in its entirety:

COUNSELING REFERRAL. If, in the opinion of the attending physician or the consulting physician, a patient may be suffering from a psychiatric or psychological disorder or depression causing impaired judgment, either physician shall refer the patient for counseling. Medication to end a patient's life in a humane and dignified manner shall not be prescribed until the person performing the counseling determines that the patient is not suffering from a psychiatric or psychological disorder or depression causing impaired judgment.

Yes, there is still potential for getting a doctor who is oblivious to the the signs of depression and does not become suspicious enough to refer the patient to counseling in the first place, but I think most doctors are going to be vigilant to satisfy their own ethics.

But assisted-suicide "gatekeepers" should still distinguish certain patients as having a diminished capacity to make this choice, even if though they are excluded from DSM-IV depression? Or are you saying the opposite?

Yes, it's the "If, in the opinion of the attending physician or the consulting physician ..." clause that I'm getting at. I agree that most will have the self-awareness of when they're out of their depth, but I don't think all will. And as far as I can see, a patient who's irrationally fixed on dying could shop for a referral to a doctor who will go along with it.

To me, I-1000 is written by someone with no knowledge of the psychology themselves, but the quote from the Werth and Wineberg article sounds to be written by those who do. My intention on bringing up the DSM-IV definition was to perhaps clarify what Werth and Wineberg may not have explicitly stated in their article. They may be using "clinical depression" in a way to specifically exclude it from such forms of sitiational depression. I am not venturing an opinion either way as to whether or not I think situation depression should exclude a person from assisted-suicide. My reading of I-1000 is that it would exclude them.

Even with that issue left unaddressed, I think it is unfair to restrict the other 83% candidates for whom this is not even an issue, just because a portion of the other 17% might use it to die a few months early because their judgment was impaired.

Lacking the time right now to go into extensive discussion on the subject, and having stories of my own (not of my own decisions, but those of relatives) to tell, I will distill my conclusion about I-1000 here instead:

Voting against this initiative sends the wrong message to a legislature that should instead be tasked with working to further improve it after the first two years. Therefore, I feel that we must attempt as best we can to pass it.

I know I'm touchy about hearing that I should vote based on something besides the effect of what I'm voting on -- that there are cases where the law's effect is on balance a negative, but the message should outweigh that. Possibly unreasonably touchy, I admit. It really does make me glare.

That being said, I would argue, I *think* reasonably, that

1) if there are such cases, they're probably pretty slim, i.e. the law's effect can't be much of a negative for the message to counterbalance it. So there's probably a good argument to be made that the effect is a net positive, and I'd rather listen to that argument.

2) Sending-a-message arguments can be constructed in a lot of directions, and it's not easy to evaluate which outweighs which. For this initiative, I may say it sends the wrong message that other states should adopt the OR-WA model of assisted suicide unchanged.

unfortunately, since we have an initiative system in this state, i think we vote on 3 or 4 of those cases every election.

The prescribing doctor is a palliative-care specialist.
I feel sorry for that guy.
All his patients have terminal illnesses and are in severe pain.
His job is to persuade them not to commit suicide.
Sometimes they take the quick way out; sometimes the slow way.
But they all die anyway.

Wikipedia says I may be confusing palliative care with "hospice care".

I may be confusing them too.

From what I understand about this initiative is that it is only for people who are so sick they have to either be cared for 24-hours a day at home or in hospice care. I don't think a terminal diagnosis while you're still functioning is enough to warrant being prescribed a lethal dose of medication. If a person were able to get up and walk across the room and they also were distraught to the point of wanting to die, they could find a way to commit suicide. I think this initiative is meant to be for people who can barely move on their own and are so disabled by their terminal illness they are too sick to commit suicide on their own.

The way I look at it is I would like to have the choice. Not if I'm ambulatory and still functional, but if I were paralyzed or had wasted away so much I couldn't move and I knew that my last few weeks would be nothing but horrendous pain, I would like to know I could be relieved of that. I have kind of a different perspective because when I was 26 I was in a car accident that broke my neck and had the fracture injured my spinal cord I would've been quadraplegic (paralyzed from the neck down). That was a shocking realization that I would've had no choice to be to be on life support for the rest of my life even though that is not what I want (enter Advanced Directive). So, having been faced with almost being paralyzed from the neck down, I feel like having a choice to not have to live in a horribly damaged body is extremely important.

I'm not sure how to read your use of “is meant to”, but I-1000 doesn't directly consider ability or quality-of-life stuff afaict— if I had a terminal disease that would be completely asymptomatic for 5.9 months and then make my head explode, I'd be eligible under I-1000. (At least, that's what Sec. 2 (1) reads like to me.)

OTOH, I think it would be pretty odd for someone to take their life before the disease started really seriously affecting them.

(There are also legal ramifications to suicide; I-1000 defines the legal cause of death to be the terminal illness. I guess the suicide is just the mechanism, the proximate cause.)

Honestly, I'd have serious concerns about the insurance companies pushing this (in one way or another) because for them it's cheap and easy. Concerns like this (that others have already discussed well) would make me not want to support it.

Another question to think about is how public medical assistance would fund this? Would they continue to fund all other options? Probably they would, but that also would concern me.

Of course, for me this is also a matter of faith, so it goes deeper than the practical concerns. My mother once said that suicide, even when one is ill and in pain, cuts the soul off from any further growth. I do agree with her...though not everyone believes this way. But, it's food for thought. It is scary to think of society developing down a path that would take this choice out of the hands of the person involved, which is not what this proposition is about, but it could set legal precedent that could someday produce scarier legislation.

Legislating on moral issues is, to say the least, a slippery slope at times. It is tough to know what would be best.

I hear you. I don't really see, myself, the path where this would be likely to lead against self-determination instead of towards it.

Daunted by this one as well, but less so now that I've read the nice discussion.
It feels weird to even vote on whether someone else will get to make a choice about their own life, which I guess means that I will either vote yes or abstain. But, shouldn't this question be before the judicial system rather than the voting public?

Of concern to me is misinformation. Are we allowing a greater likelihood of people being 'buried alive' - for people who were misdiagnosed as terminal? Also, this law seems to open up another avenue for plotting an scheming by family members or interested parties.

But doctors and nurses will still advocate their patients against the insurance companies, and I feel pretty strongly that the motivations of medical care professionals are good.

I guess, overall, I agree with the earlier comment that we should allow assisted suicide and then fix it if necessary. Yes, that means some people could get screwed. Sigh.

Sort of off on a tangent from family relations --

Or there's guilt, "I never want to be a burden." That's not something that perfect insurance could always help with, either. I know someone who says "I never want to be a burden" and whom I could think might make herself no burden even if her relatives swore they'd rather have her a burden than gone.

Ultimately I still think there are situations where that should morally be her call to make, but I don't have to like it.

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