A New Candidate for Strangest Conversation in the World

Heads up: If you think my last few posts have been morbid, this may be one you want to skip. Just sayin'...


Imagine a conversation with your dental hygienist. You're sitting in the chair and she's asking you about your flossing habits. You're telling her that you floss every day, even though the last time you saw your dental floss it was buried in the kitchen junk drawer because last Thanksgiving you ran out of string and had to use dental floss to truss your turkey. And even though she knows you're lying, and you know that she knows you're lying, it's all very professional, friendly and collegial. 

Now imagine that instead of talking about your oral hygiene habits you're talking about the process for securing the drugs that will allow you to depart this mortal coil before you wind up semi-conscious, wearing diapers and on a morphine drip. 

That's the conversation I had with my palliative nurse this morning, and it was the strangest conversation I have ever had (and I've had a fair number of odd conversations in the last two years). 

The thing I love about my palliative nurse is that she has mastered the ability to (appear to?) be emotionally engaged while never, ever allowing that emotion to break. I've found that when it comes to cancer people wind up on a spectrum. At one end you've got folks like most of the oncologists I've dealt with. They're sort of like the guy on Dragnet. They basically bring zero affect to the table, so all you get are facts. At the other end of the spectrum are the emotional wrecks. The people who unable to get past the emotions of the situation and so they just emote. 

Now obviously, most people fall somewhere in between. But here's where my palliative nurse, as well as my PA and a few others I interact with, excel. Most people, when you get into the nitty gritty of cancer and dying, they break. You can see it in their faces. They either completely disengage with you as a person, or the emotion becomes too much. Tears well. Voice patterns change. You can see them working to keep themselves together.

My palliative nurse? Never. She never retreats, not even an inch, but she never reveals the slightest indication of being overwhelmed either. It's really amazing to watch. 

Anyway, back assisted suicide. 

So the SCCA does not have an institutional stance on departing early. It's up to the patient's individual doctor, though the social work department will help you find a supportive doctor if the one you've got isn't. Interestingly, she didn't have a lot of specific information about the actual drugs they prescribe as it seems like there's a fair amount of variance. They'll prescribe an anti-nausea pill to take first, so you don't heave up what follows, and something that keeps your heart from freaking out when you take the drugs, but then it's essentially just a gigantic overdose of some narcotic. What that narcotic is will depend on, at least in part, on what's actually available as these drugs can become hard to get. Interestingly, finding a compounding pharmacy that can dispense the drugs can also be problematic. You can't just drop in at Walgreens and pick it up. The medication has to be specifically constructed for you, and there are only a few pharmacies in the state that can do it. 

The drugs have to be dispensed in Washington state, though when I asked what she knew about the viability of going somewhere else to take them, she just sort of smiled and said somethings you just don't want to explicitly talk about. Fair enough, though I'll come back to this subject in a minute.

Eventually our conversation turned to some of the practicalities associated with this process, and some of the more statistics. When she started to talk about why -- at least in theory -- there seems to be a significant number of patients who secure the prescriptions but never fill them, things got really interesting. And by "interesting," I mean so monumentally insane that it makes my head explode.

Why do patients secure, but not fill, their prescription for drugs to expedite their passing?

Reason #1 -- They can't afford them

According to my nurse, the drugs prescribed to kill you -- let's just call a spade a spade; I'm running out of euphemisms -- can cost as much as $1,500. And "of course," she says, "insurance won't pay for it so it's all out of pocket." So yet again, we have a case where one's health care options are significantly dependent on one's financial resources. 

Best health care in the world, baby!

But here's the head exploding part. Assume for the moment that a) you have cancer and just six months to live, and b) you have reasonably good health insurance. At this point, you basically have three options: 1) you can opt for the death with dignity at a cost of $1,500; 2) you can opt to continue with chemo, at a cost of roughly $50,000 a month for six months or $300,000; or 3) you can opt for palliative care only for six months which, at Medicare's designated $151/day rate, would cost approximately $27,000. 

So for your last six months of life your insurance company can expect to pay $300,000 or $27,000 or $1,500, but they specifically exclude the $1,500 option as unallowable. What the hell? How can this possibly make sense? Aside from religious zealots, fake religious zealots, hypocritical politicians, the fearful, and the generally ignorant, who could possibly gain from such a stupid, stupid policy?

Nevermind. I answered my own question. 

Reason #2 -- They can't get the packaging open

Remember how I mentioned that the killer drugs are basically just a big overdose of narcotics. My nurse tells me that in at least one configuration used in the past, the prescription was for ninety capsules, each one individually wrapped. Ninety! So you spend your last hours on earth peeling the backing off ninety little capsule windows? Assuming, of course, you can do it. Speaking from experience, when I was on my first set of infusions late in 2014 buttoning a shirt was asking a lot. I'm not sure I physically could have pulled the backing off ninety capsules -- at least not without spending a few days on the task. Apparently, others have had that same problem.

And by the way, ninety pills? Who wants to swallow ninety pills?

And by the way again, if one wishes to depart this mortal coil in some beautiful and exotic place, how on earth are you supposed to get ninety pills -- and high-powered narcotics no less -- through airport security? 

Reason #3 -- They wait too long

This is the one that terrifies me. You've got your magic pills, you're all set to go, but today's a pretty good day so you decide to wait. And then tomorrow's pretty good, too, so you wait again. And you keep waiting, and keep waiting, though good is becoming less good, and then suddenly good is terrible, but you're no longer home with your magic pills. Instead you're in the hospital with a bunch of people trying to keep you alive. They can't, and they don't, but your time table is now their time table. 

Reason #4 -- They change their mind

The loss of control never comes, or isn't as bad as expected. The pain proves tolerable. The cost of care is less than was feared. In short, whatever it was that drove the patient to ask for the escape hatch stops being an issue. 


One last bit of humor. So, the death with dignity law includes a section that recommends that the patient have someone present when they decide to depart. I asked my nurse if she knew the logic behind it. She had two answers. First, so that there's someone there to deal with the body. Fair enough. Second, and this is what I found funny, "in case something goes wrong so they can call someone." In case something goes wrong? Like what? Like not having taken enough drug. Come again? How would this observer know you hadn't taken enough drug? Do they get a checklist or something? And who do they call? It's not like you can call 911 and say, "I've got a patient opting for death with dignity, but they didn't take enough drug. Could you come out and give them some more?" I mean, if something goes wrong it seems like you'd have way bigger problems than any observer could solve -- at least an unarmed observer. But having I think inadvertently dug this hole, the nurse dug her way out by explaining that she'd never heard of a case where the drugs didn't have the desired effect.

And so ended my very weird conversation.