Best I can figure is be kind to nurses (caveat: see my earlier blog post, Don’t Be Nice for a further examination). Yet, don’t let understaffing undermine your resolve when acting as a proxy.

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Why Do We Buy Off-the-Shelf Dying?

Ninety percent of us say that we want to die in peace, at home. Most end-of-life guidance suggests only that we express our wishes to our loved ones and medical proxy, writing directives via two (of seven primary) related legal documents: an Advance Directive and a Durable Medical Power of Attorney.

These challenging actions are presented as, and believed to be, sufficient to secure a peaceful demise. It ain’t necessarily so. Conversations and directives are crucial steps everyone should take. Nonetheless, it’s easy to overshoot one’s exit to a peaceful demise due to chance, shifting events, errors, even design. To increase the likelihood of dying peacefully we must know things about which medicine knows but does not, perhaps cannot, advise us.

In 2004 my mother experienced sudden respiratory failure. She was quickly intubated, placed on a breathing ventilator in an ICU. She died there after 3 weeks, treatment having failed. Fifteen months later Dad wanted to return here from Florida to live near his children. He scootered himself into a hospital, accredited as among the country’s 100 best, for cardiac pacemaker eligibility testing. While there he contracted a hospital-acquired urinary tract MRSA infection which spread to his blood and painfully lodged in a wrist. Dad’s demise also took 3 weeks to unfold; days pass in confusion, “hospital time,” and awaiting diagnoses. Both hospitalizations were trouble-prone even with advance declarations decrying heroic treatment (a moving target).

Seeking to understand how and why we failed, I worked backward from the goal: to die in peace. Key things I’ve learned include:

• Medical anthropologist Sharon Kaufman has shown that “death is timed in hospitals” (And a Time to Die: How American Hospitals Shape the End of Life). All parties involved—providers, insurers, patient-families—play well-known roles that consistently unfold over 2 to 3 weeks despite myriad variables.

• Lay people think of resuscitation technology only as emergency intervention. It’s actually three things on a very slippery continuum: life support, standard operating procedure (literally, during surgery), and—this is the crux—treatment, whenever providers deem it so and we accept it as such. Medicine imposes first responder, surgical requirements, and bedside inclinations about this.

• Respected reports (Institute of Medicine, 1999; Healthgrades, 2004; U.S. Dept. of Health and Human Services, 2011) identify institutional medical error among America’s highest causes of death, and accelerating. The wrong error can put the kibosh on any patient-family’s advance planning.

• Failure to recognize medical milestones derails our wishes. During our last decades we utilize medicine repeatedly to restore quality of life and save life. When we understand that we’ve already engaged in heroic measures over 5–20 years we might not feel impelled to do so again at the risk of ruining our chance to die peacefully.

• You don’t have to slog through curative treatment to wait for a doctor to reluctantly suggest a palliative consult; you can ask for one anytime.

• Let hospital chaplains know you’re admitted, simply to get on their radar. They can readily intercede on our behalf, cutting through confusion we and our proxies typically experience—before crises intensify and drag on.

• Medical advocacy is much more than being a second pair of eyes and ears (that’s just witnessing). Take a workshop, or read, and learn how to succeed in this vital role.
Is it fair to expect medicine and hospice to explain all this? I don’t know. But they don’t, and we remain confused. So we buy “off-the-shelf dying”—troubled deaths so routine in medicine that they’ve become an experiential commodity (we don’t realize this because we’re not often in the market for dying). While we gratefully welcome palliative and hospice providers’ help, the unspoken subtext is that they’ll save us from dying badly. We risk that the saving will be incomplete—trying to soften an end of life train wreck because we’ve jumped the tracks despite our advance intentions. We must engineer our own train; to slow and exit onto a siding where palliative and hospice folks can help us disembark.

Thus far no part of medicine has found the words, will, wisdom, or bandwidth to convey all this to lay people in an advance package. We typically learn through bitter experience. “Don’t ask, don’t tell” makes for anguished deaths. Each of us can change that.

We’re insured under a high-deductible plan. We have yet to meet our deductible in any plan year; essentially making us a cash customer for any treatment purchase that’s not fully covered as preventive.

A family member was prescribed, as part of her well-woman exam, a series of blood tests, a colonoscopy, bone scan, and mammography. Our plan lists these treatments as 100 percent covered if in-network. Early in a plan year on a high-deductible plan you’ll be paying the entire cost out of pocket, so careful shopping is prudent.

To verify coverage I called our insurer, Anthem Lumenos. I’d already learned, under a previous insurer who required pre-authorization for everything, that health treatment services are actually insured a la carte, like a cake billed as each ingredient, prep time, pouring, pan rental, oven charge, and a restaurant fee.

I had previously learned about colonoscopies, which carry a provider charge and a facility charge. Extrapolate that to other procedures and you learn that a mammogram is billed as the scan plus its reading by a third party. But it’s not enough to know even this much, for nowadays it’s entirely possible that the provider performing a procedure may be in-network, but the facility in which the procedure occurs may not be in-network—akin to the chef being in network but not his restaurant. (Esoteric insider clues: 1. ask if all providers and the facility bill under a common tax ID number; 2. when you cross over carpet onto linoleum you’re entering, and utilizing, a facility—too bad there’s no pay phone there to call for pre-authorization).

The Lumenos agent told me that three of the blood tests were 100 percent covered if in-network and if coded as screening (distinct from diagnostic; “screening” designates preventive investigation whereas “diagnostic” indicates investigation for a suspected condition—and if you can tell the difference between the two you’re a better advocate than I). Imagine my surprise when she advised me that three of the tests “might be” covered but she could not say with certainty. Apparently these tests are subject to some after-the-fact status interpretation. (What would cause a changed designation? What phase the moon?)

Since Lumenos couldn’t give me a guarantee of coverage even for these in-network screenings, I figured to cover myself and do a little healthcare consumer shopping. Working from the back end (often an effective strategy), I called our local hospital’s billing office. I’m already aware that facilities offer cash discounts of 40-50 percent on a “cash and carry” basis depending upon when one pays. It turns out that they refer to this as an “uninsured” transaction. The financial counseling rep advised me not to buy treatment this way. She said that she has seen—more than once—an insurer refuse to cover further testing and future treatments emanating from an insurable treatment purchase paid directly by consumers. She further said that the cost paid would not be accepted by an insurer against my annual deductible. Further still, once treatment is billed as either insured or direct pay, it cannot subsequently be redesignated.

So I asked what the costs would be for me under Lumenos versus if I were to pay directly. She could not contractually reveal the discount the hospital gives to insurers (but did cite a 30-50 percent insurer discount range in general). Back on the phone with Lumenos, the rep told me they would not reveal their discount.

In other words, it’s not possible to price all routine services before paying for them. We must choose a payment option not knowing its comparative cost. Paying an in-network provider directly could preclude future coverage and doesn’t accrue against deductible. So much for consumer choice when it becomes impossible to ascertain in advance what our coverage covers, and what procedures cost.

Like Dave, some time ago I tried shopping around my town for the price of a CT scan (in my case, potentially for our daughter). I had a bit of an easier time of it, but Dave’s experience, my own, plus my experience some years back around having my 50-year-old benchmark colonoscopy are all textbook examples of how crazy the scene is (at that time my insurance required pre-auth’s, so I pre-authed the procedure thinking it was a done deal, only to get billed $500 for the facility [um, the procedure took place in the back of the office, which evidently became a "facility" when you rolled off the carpet and onto linoleum, groggy in a gurney] and the insurer refused to “post-auth” this charge, which hadn’t been disclosed to me. Got that? When the office wag I was on the phone with back then told me that I burst out laughing and, when I regained control, blurted out” well you ought to have a pay phone there so I could have called for the facility pre-auth…).

Dave likens the business workings of a hospital to those of two different restaurants in some mall—mere presence in a single building don’t necessarily make a connection. Although you’d think that since *you* are the connection between departments in a hospital and there’s no relation between the restaurants—oh, I can’t even bear to keep typing; you get the idea, I hope.

I like to simplify things, and today’s simplification is this: always inquire something along the lines of “how many separate charges from which separate entities together comprise this thing called “a procedure” which I am in the market for?” Answering that question may take you down a rabbit hole but you will be one wiser and possibly empowered healthcare shopper at the end of that “procedure.”

One thing to be sure to check on is whether any out of pocket (“self-insured”) expenditure you make can be applied to and accrue toward your deductible. It’s possible that you may save $500-1,000 on a CT scan but that the $500 you do pay will do nothing to lower the out of pocket balance on your annual health insurance ledger.

Self-directed dying, for those diagnosed by several physicians as terminal with 6 months or less to live, offers a peaceful demise to those who are dying from debilitating diseases that guarantee a languished, anguished end if taken to their bitter end. Dr. Goodwin did not go without regrets, but he did go peacefully—an outcome virtually all of us say we want, very few of us achieve, and fewer of us know how to increase the likelihood of attaining no matter where we live. This because we’re all too scared, or cowed, to talk, to think, to choose. So we wait. And wait…beyond the several late life hospitalizations and debilitations likely in store, until events grab us like the existential tornados I’ve experienced them to be during the hospitalized demises of each of my parents, despite advance directives suggesting they’d have rather experienced peace at their life’s close. Extracting oneself or a loved one from a late-life terminal medical crucible is difficult at best; it was impossible for my patient-family. The crucible is particularly awful when the patient-family is the subject of medical error and other systemic maltreatment.

Euphemisms abound for self-directed dying. The American right uses “death panels”. The press uses “physician assisted suicide” (although that third word is inaccurate once one is diagnosed as terminal). Doctors (be they curative, palliative, or hospice docs) who provide palliative sedation in sufficient doses to end life use the cover of St. Thomas Acquinas’s Principle of Double Effect, which says that dying is an acceptable outcome if the doctor’s primary intent is to relieve suffering. Dr. Tom Preston uses “patient-directed dying” in his book of the same name. I use “self-directed dying” because that places the ownership on how we close our lives where it rightfully belongs: in each our own hands.

That’s as it should be. And it’s a truly brave act to hold that choice close.

An an author, new distribution platforms interest me. As do new Macintosh/Apple content creation tools, because I’m a Macintosh user since 1987, when I began converting my paper and wax graphic design operation to the desktop.

Apple yesterday released a new book authoring program, iBooks Author. It’s free, and you use it to make beautiful and nifty books to distribute on the iPad (assuming Apple approves your submission). Think of iBooks Author as GarageBand for writers. There’s definitely a cool factor here.

However, on his blog Dan Wineman did an early read of Apple’s iBooks Author end user license agreement (EULA) and has uncovered what appears to be an unprecedented claim by Apple on the content any author develops within the application. Wineman subsequently rebuts some critical comments regarding his initial blog post.

Who knows where this will end up but for now it would seem that authors take a hard look at the EULA, perhaps with legal guidance, before committing a new project to iBooks Author for iPad distribution.

Note: that aside, do investigate this nifty new tool for conventional and dynamic content creation. You’ll probably drool in anticipation of what you could put in patient-families’ hands in an iPad at the bedside.

This past fall it suddenly occurred to me that the 3-graph set is antiquated. I figured that it should be four, and my colleague Jennifer Ballentine (a towering figure in Colorado’s palliative care community) offered a fifth.

So I’ve added a fourth graph for medical error. While not all medical error results in injury or death, two widely recognized studies less than a decade apart identified medical error as among the leading causes of death in America—and at an accelerating rate. The first study, the Institute of Medicine’s To Err is Human: Building a Safer Health Care System, concluded in 1999 that about 98,000 annual deaths result from medical error. The second study, HealthGrades’ Patient Safety in American Hospitals showed, using Medicare data, that about 195,000 annual deaths result from medical error.

Let’s put this in perspective: at these numbers, depending on how you source or crunch the data, medical error is somewhere in the top five causes of death nationally, possibly even the second leading cause. One day, months after learning all this, the thought occurred to me that this cause of death deserved to be graphed and included with the initial three. I’ve done that and include the figure in my presentations about opting to die in peace. My graph’s slope has been agreed with by a highly regarded palliative care physician, and I footnote the figure with the previous disclaimer about how not all errors result in harm, plus that I’m the source and my “data” is anecdotal (although perhaps a better word might be “interpretive”). Actually, the figure works best when superimposed onto or juxtaposed with the three “legacy” end of life graphs since, almost by definition, medical error is likely to ensue during a hospitalization, which is most likely to ensue due to a cancer, organ failure, or cognitive decline event. Each of my trajectory renditions refers to the last twenty or so years of life; the medical error slope’s long tail indicates some years of life that are lost due to the error.

Sharing this with Jennifer she let loose with: you should graph PVS: persistent vegetative state. Major aha and eye popping moment, because a person in a PVS never dies. The tail of a PVS EOL graph extends forever, until the “plug is pulled” otherwise death never occurs, it remains “out there” somewhere (I say death; perhaps I mean to say “closure”).

If you’ve already seen graphs depicting medical error as a primary cause of death that we as lay persons, who will die, ought to account for and reckon with, and depicting PVS as an endless end-stage, in the context of making end of life choices, let me know. I haven’t. These are not the sort of visuals I would expect medicine to present. They bluntly present two very real end-stage conditions that those who really want to die in peace would be well advised to consider.

In my second career, as a graphic designer (which I occasionally practice today), I was used to using computers to generate type. Those systems were proprietary to the printing trade. I typed away, then processed lengths of photosensitive paper called galleys in lightproof canisters, developed the paper, waxed the back of it with hot wax applied through a screen in the heated wax dispenser, cut out pieces with a #11 exacto knife, and pasted them onto thick cardboard sheets which I had prepared by drawing light blue lines that constructed the pages’ geometry. This was the way of it for decades, including throughout the 1970s and early 1980s.

Starting in 1984 I tracked closely the new Apple Macintosh computers. I knew I didn’t want to try to work on a tiny 9″ screen, and recognized that the typesetting and graphic design industries were about to undergo a transformation unlike any previously seen. (In fact, the entire typesetting industry—which began with Gutenberg centuries earlier—collapsed within about only decade due solely to the capabilities intrinsic to Apple’s Macintosh computing platform). I waited until 1986 or 87 for the first modular Macintosh—which meant that the video displays were separated from the box housing the computer, meaning that I could, and did, get a 19″ grayscale display to show my workspace at size, and a 13″ color secondary display to hold program palettes, various open applications, and for viewing the work in color. Macintosh changed my professional and personal life, as its progeny have likely changed yours. In the 1990s, in addition to designing, I offered software training. I remember literally shaking as I began my first ever software training class in a 12-seat computer lab. Those classes were precursors enabling me to present to larger audiences today.

In a world filled with mediocracy, Steve Jobs gave us excellence through objects of beauty, grace, refinement, and supreme utility.

I’m very sorry Steve’s gone.

Too soon.