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I’ve thought a lot about dying this last week.  I’ve shied away from really thinking about dying for awhile now. I mean deeply, deeply thinking about it.

It’s unnecessary of me to mention that most of us shy away from it all the time until it hits us in the face. Self-protective that. We think we think about it. I can verify that the process of thinking about dying has a completely different flavor and texture when you are the one that the process is swallowing up.

I’m forcing myself now...and  I mean really, really forcing myself to think it through and dissect in my head what it means to be “dying" versus “living". I want to examine how both coexist in the human experience – scrap that, my experience; I should look at the space between life and death, and ponder what fills up that space and how I go about choosing those things that fill the noisy volume.  Or not. This is a tangentially different mental and emotional exercise for me – I’ve jumped the death barricades before as a survivor, as a family member, a sister, a daughter, a friend. But this time, I’m examining it for me.

 
Weeks, no, months ago, when I first received my stated terminal diagnosis, I was told I wouldn’t have this long to think about such things. The medical literature out there suggests that most who have been diagnosed with what I have survive an average of 4 to 8 months after diagnosis – even with chemotherapy, even with the best of palliative measures. For some, a very few, surgery has proven to extend that short time to a bit longer – months maybe, possibly a handful of years in just a handful of cases known. I’m still waiting on the verdict of that one (for me).

I’ve beaten the prognosis so far, but recent scans bear out that this stuff I have is a tsunami of malignant cells in the blood, waves of nasty blood-based cells rapaciously reinserting themselves as soon as possible if the field is clear. Don’t get me wrong. I’m still living. But there’s a shadow of dying right behind me, lightly touching me, speeding up the second hand on that internal clock.

The shade doesn’t impact much right now in my daily life. Sure, I think about it as I purchase yet another object that will outlive me, and I answer the question “should I buy this? Just one more thing the kids will have to deal with when I’m gone" each time I make a purchase. A new pair of jeans that fits me better. “Should I really spend the money, or just get by with these too large stonewashed denims from last year?" Take for instance the deck broom I bought at Lowes today to clean the algae off of my deck. Those bristles will last longer than I. Imagine.

Each movement, each purchase, almost every action seems weighted on some kind of balancing scale in my brain – not always consciously, but there, sliding up and down, nonetheless. This kind of mental stuff doesn’t take me any time and it hasn’t yet turned into a paranoia. I see it as a kind of defense, or reactive mechanism, a mental check to myself that life just can’t be lived quite the same way it was lived when I dreamt I had forever. I still have forever – it’s just chaptered differently.

I thought about that space, between dying and death, when I drew up my will and Advanced Directives. I think about it when I realize I still need to get my garage cleaned out (as if delaying the process actually gives me more time – hah!). But none of this thinking was the deep shit.

Perhaps that earlier prognosis they gave me in the first hospital made it easier – not thinking I had enough time to think too deeply.  Now there’s an awkward thought.

It turns out I have a smorgasbord of dying items rattling around. And that space I mentioned is filled with yet another scale, a pulsing graph kind of scale, the kind you see on the screen when you’re downloading software. At one end is the living, to the left, to the left; the green bar is alive and active, the white void ahead unknown. As the bar progresses towards the end, the bar is still green, but the balance has swung and the dying becomes the dominant part of the green.

I ask myself – I have to ask myself – will that dominant part towards the end so supercede the living part, the joyful early green part, the painful but manageable part of life, that letting the balance tip towards death becomes desirable, wished for, granted?  

I have a lot of options at life right now. But at some point, those options will decrease to nothing. The smorgasbord is set with a comprehension that my dying could encompass so many different paths. I may likely die of respiratory failure – pulmonary edema from failing lungs due to increasing metastasis. I could die of heart failure – potentially a long and protracted failure of the heart to function. Or the damn thing could explode one of these days. Another awkward thought. Gotta stop lifting that furniture.

I’ve watched this now tipping scale in two of my loved ones.  For them, it was death by drowning in the dry environment of either a hospital or a bedroom.  I’ve watched this and heard it and felt the heaving chests, swabbed the drying mouths, bathed the final oils from the cooling skin during the slow, winding down process of breath taken painfully in, aired out as a whisper. In that space, it isn’t life anymore, at least to me. In that space, between dying and death, you would think there might be a silence. But there is no quiet in the dying noise, the unspeaking rasp, the gurgling rattle, the chest that pulses abnormally with each hard-fought beat of a spongey, worn-out heart. There is no quiet, no recompense for the family surrounding the struggle. I can’t imagine a time when I’d want my children to gather to watch this. I live, don’t you know?

I really don’t know. I could die quickly, without pain, from metastasis and complications arising from anywhere else besides heart and lungs this stuff decides to land and spread. Brain, bone, other organs – it’s like the buckshot of cancers, this sarcoma.

So, what are my options now – what roads do I have clear to make certain I have a choice at least, as I reach the end of my download? Don’t underestimate the power of action at any time – even the end of time. “It gives new life to thee." Even in the pursuit of death.

Filling that space with action has sent me on a path of discovery towards what types of rights the newly enacted Death with Dignity Act in Washington State, passed by the legislature November 4, 2008, granted an individual at the end of life. What were the requirements, what were the obstacles, both legal and societal, and what are some of the discussions from all sides – those opposing such rights and those advocating for them, as well as those issues that fall between opposition and advocacy.

Statistics reported in the first week of March in Washington State indicate that a few dozen individuals have found themselves exploring this same space between dying and death.

The report showed that 63 patients were prescribed the medication. Of those, 47 died, but not all of them from the medication. Thirty-six took the lethal dose, and seven died without it. It's not known whether the four others who died had taken the medication.
.............
Some 53 doctors prescribed the medication, and 29 pharmacists dispensed it, the state reported.
The report gave these statistics about the patients who filled those prescriptions and later died:
• All were between 48 and 95 years of age; 59 percent were between 65 and 84.
• 79 percent had terminal cancer. Nine percent had a neurodegenerative disease and another 9 percent had a respiratory disease.
• 90 percent lived in Western Washington.

As a potential “consumer" of this act, a constituent with a vested interest, I find the reported discovery that many have sought to utilize the Death with Dignity Act in Washington State, but have waited too long to start the process. The current law requires multiple steps and safeguards that must be taken by both patient and attending physicians. Potentially, the step that might be the hardest to perform in satisfying the boundaries of the law is the step that requires both a written and two oral requests for the medication, with a time delay of no less than fifteen days.

Sec. 9. WRITTEN AND ORAL REQUESTS. To receive a prescription for medication that the qualified patient may self-administer to end his or her life in a humane and dignified manner, a qualified patient shall have made an oral request and a written request, and reiterate the oral request to his or her attending physician at least fifteen days after making the initial oral request. At the time the qualified patient makes his or her second oral request, the attending physician shall offer the qualified patient an opportunity to rescind the request.
(emphasis mine)

Fifteen days can be a long time in that space between dying and death. That noisy space.

I won’t deny that I had and still have a strong and clear feeling that the end of a person’s life should be as sacred to the individual as any choice they actively make while living that life. If a person so chooses in the course of dying to accelerate their death to bypass pain and suffering, or at least some of it and to avoid a protracted shell of an existence in the absence of any other option, well, hell, I believe that should be the right of the individual. These are my beliefs alone and do not necessarily reflect the beliefs of others who either read or post on this site.

Please understand this is a journey (yeah, I repeat myself). Those questions above about the process, both sides, all sides?  I’ll have more to report on the answers in the future, should you care to follow along. And there are discussions to be had on the various organizations involved establishing Death with Dignity laws in both Washington State and Oregon. There is the space between hospice care and the considerations of assisted dying – and how the two interact, when they interact.

There is a discussion of some merit that we can have involving physicians' perception of such legislation – I’m in the process of informally interviewing several physicians as time allows on their thoughts, and I can verify that the spectrum of opinion, so far, is wide.

For now, consider the questions yourself if you can. I’m interested.

As time allows over the next few months. So long as time, and space allow.

So long as men can breathe, or eyes can see,
So long lives this, and this gives life to thee.
Shakespeare, Sonnet XVIII

Reference links:

Originally posted to Daily Kos on Sun Mar 21, 2010 at 09:01 AM PDT.

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