thinking about I-1000

[eub]

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:

1. The prescribing doctor is a palliative-care specialist. (I think this mostly-ensures they know how to counsel about death and choices.)
   
2. Consultation with someone with a certain level of expertise in psychiatric evaluation.
   
3. If either of these says no, their reasons are made available to the next one the patient may go to.
   
4. 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.

Comments

[pauldf.livejournal.com]

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.

[eub.livejournal.com]

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.

[yami-mcmoots.livejournal.com]

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.

[eub.livejournal.com]

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

[pauldf.livejournal.com]

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.