12 October, 2008

This Slope Ain't Slippery

My dear heart sister NP weighed in on my I-1000 post with a common concern:
I'm curious to see other readers' comments on this, as well as your responses, Dana.

My concern with this initiative would be who makes the decision and when. While there are wonderful people in this world who want the best for their families, there are also people in this world who might make the decision prematurely, perhaps despite the patients' wishes, and instead of preserving the dignity of a loved one would, in fact, be committing murder.

I'm not speaking from a religious/spiritual place here, although my spiritual views do have an influence on how I feel.

Maybe I watch too much Law & Order, but I can see so many people taking advantage of this Initiative, rather than using it the way it was intended: to preserve human dignity.

And with something like illness or injury, there are so many factors in determining quality of life, and so many varying degrees of "how sick s/he is," I don't know how a piece of legislature could be written in order to benefit those who would use it wisely, but protect those whose families would use it unwisely.
Back in my reading-too-many-books-by-profilers days, I had the same concern. I don't anymore, but I can understand why caring, loving people like NP would.

No human endeavor will ever be perfect, and no piece of legislation can prevent all abuses. But I-1000 comes as close as possible. It is, in fact, so restrictive that it wouldn't have saved my grandmother from a long, lingering, undignified death.

Here's what the law requires (.pdf):

RESTRICTED ELIGIBILITY to those adult residents of the state who are:
• Suffering from a terminal illness, less than six months to live (verified by two physicians)
• Mentally capable (verified by two physicians)
• Making the request voluntarily —no coercion (verified by two physicians)

WAITING PERIODS
• At least a 15-day waiting period has taken place between the patient’s initial oral request and the subsequent written request
• No less than 48 hours shall elapse between the patient’s written request and the writing of the prescription

WRITTEN REQUEST
• Must be signed and dated by the terminally ill patient
• Must be witnessed by at least two people who attest the patient is capable and acting voluntarily, and not being coerced to sign the request
• At least one of the witnesses shall not be the patient’s attending physician, a relative, or owner, operator, or employee of a health care facility where the patient is a resident or getting medical treatment
• Patient may rescind the request at any time and in any manner

THE ATTENDING PHYSICIAN’S RESPONSIBILITIES
• To determine whether the patient has a terminal disease, is capable of making decisions, has made the request voluntarily, and is a resident of Washington
• To inform the patient of diagnosis, prognosis, risk of taking the medication to be prescribed, feasible alternatives including comfort care, hospice care, and pain control
• To refer the patient to a consulting physician for confirmation of diagnosis and determination patient is acting voluntarily
• To refer to a mental health professional if the patient may be suffering from psychological disorder
• To recommend that the patient notify next of kin
• To complete all required documents

Those requirements make it very nearly impossible for greedy or nefarious family members (or insurance companies, for that matter) to usher anyone into the Great Beyond who doesn't have their bags packed and are eager to go. It also limits the dangers of false positives - a patient being told they have six months to live and will die in horrible agony, only to discover later that the diagnosing physician was a nitwit who couldn't tell a benign lump from a man-eating tumor.

You might remember, too, that Oregon horrified the country about a decade ago by enacting just such a law as this. I dimly recall the hoardes of screaming fundies proclaiming the end of life as we know it. Oregon, they predicted, would turn into a state full of murdering Nazis. People would be offed in droves. Eugenics couldn't be far behind. God would smite them. And so on.

There's a good reason they've turned their attention to gay marriage. Oregon failed to install gas chambers. Droves of elderly, ill and inconvenient people failed to be murdered by plotting doctors and selfish family members. Quite the opposite, in fact, as my dear state discovered when they looked to Oregon for some indication of what to expect:

The Washington State Psychological Association found that “the quality and specificity of 10 years of comprehensive annual reports from the Oregon Department of Health on the implementation and regulation of the Oregon Death With Dignity Act and related research and data analyses do not show evidence of abuse, neglect, manipulation of, or pressure on patients in vulnerable groups in the state of Oregon. The data do not show evidence of a slippery slope toward less stringent guidelines and regulation." They further found that, "Patients choose aid in dying because of a desire for autonomy and the wish to avoid loss of dignity and control, not because of a poor mental state, lack of resources or social support." And that "the law has had a positive effect in terms of significant improvements in palliative care for all Oregonians, e.g. increased hospice referrals, advanced pain management, more home deaths, improved physician education and training in end-of-life care and detection of depression, and more open discussions among patients, doctors, and families about dying."

Well, well. Imagine that. Giving people options actually improves matters for all. Shhh, don't tell the fundies - they still can't wrap their heads around the idea that the best way to prevent abortions is to educate people about sex and then give them good contraceptives. If we tell them that enacting a Death With Dignity law actually leads to better care for those who choose to stick it out until the bitter end, their heads might explode.

I'm not worried about slippery slopes for the above reasons. Much the opposite, in fact - I'm concerned that worries about slippery slopes have forced the laws to be too restrictive. Alzheimer's patients are rarely coherent enough in their last six months of life to meet the criteria for such a law. And so they're condemned to a horrific death. I'd like to see language that addressed that. An Alzheimer's patient, or anyone else suffering a disease that will remove their ability to think long before it removes their ability to breathe, should be able to designate a person to decide these end-of-life issues for them before the disease progresses too far. They should be able to put together a legal instrument that states at what point treatment should stop, and life brought to a gentle end.

The same goes for those people like Dan Savage's mother, whose condition deteriorates so quickly that they have hours, not weeks, to live. If those last hours would be unremitting agony, they should also have the option of saying, "End it now."

But even a highly restrictive law is better than the current state of affairs. At least some terminally ill patients would be able to choose a more positive death.

My mind got changed for good on this many years ago, when I read a Reader's Digest article by a physician who, without benefit of a Death with Dignity law, prescribed powerful drugs to a cancer patient and explained to her just what dosage would be fatal. They tusseled over it for quite some time before the doctor gave in, and then he watched in fascination as her fear and depression fled. Armed with her bottle, she went on to make the most of her last few months, spending time with the family, traveling, squeezing every last drop of enjoyment out of life. When the pain grew too great, and treatment no longer helped, she gathered her family around her and chose the instant of her death. She ended on a high note.

We won't all be so lucky. But the option should be there, should we ever need it. And as Oregon has demonstrated, we need not fear sliding down the slope. It's not slippery at all.

3 comments:

Woozle said...

I have to admit to not understanding the apparent zeitgeist on this issue, i.e. that there is anything wrong with letting people kill themselves -- illness or no illness -- and allowing the assistance of a knowledgeable professional in order to prevent screwups (e.g. suicide failed, brain damage successful).

It seems to me the right to die at a time and place of one's choosing (assuming no prior accident) should be a basic human right.

Require a waiting period, perhaps, so friends and family have a chance to talk the victim out of it, or find alternatives. Require videotaping of the request, in front of multiple witnesses (including an unrelated official). There are plenty of reasons to try to discourage suicide, and to make sure the wish is genuine and rational (not impulsive or based on misunderstanding). You can't do that, however, if the victim knows she will be stopped -- by physical restraint if necessary -- if anyone finds out her intentions, and therefore carefully conceals her plans.

Perhaps I'm being unduly influenced by the suicide of my best friend in high school, who disappeared one morning and whose remains weren't found for almost a year. Perhaps it's unreasonable to think that if she'd had the option of openly requesting suicide, rather than having to do it in secret, her friends would have had a chance to talk her out of it, or at least say goodbye -- rather than spend a year wondering if she'd been murdered, raped, abducted, or what.

Perhaps it's also unreasonable to think that the suicide of a family friend, who survived long enough to change her mind, could have been similarly averted.

Or the near-suicide of another friend, who jumped off a bridge into a river and was hospitalized for something like a year (and reportedly still walks funny).

On the other hand, if I were letting my emotions override my reason on this issue, wouldn't I be arguing the opposite -- clamoring for more laws to prevent suicide, make it more difficult, etc.?

I understand that the situation is a little different in cases of terminal illness, but I don't see how it is fundamentally different -- even if the patient is non compos mentis and someone is acting on his/her behalf: you can examine the custodian's motives, you can look at the data for the illness in question, you can get doctors' opinions, you can allow every opportunity for someone to say "wait a minute!" -- but ultimately if someone thinks it's time to go, or has given someone else the right to make that decision on her/his behalf (once the process has been followed to make sure there is no real reason to question that decision), then that right should be held sacred.

NP said...

Thanks for the clarification. The "harm none" side of me is still unsure about this, but at least the legislature addressed my concerns.

Thanks!

RBH said...

NP wrote

The "harm none" side of me is still unsure about this, but at least the legislature addressed my concerns.

Address your "harm none" uncertainty by answering this question: Who gets to decide what "harm" consists of for me when/if the time comes for me to ask for the pills? You? Nope. You do not have the right to decide that on my behalf. That right is mine.