Government is failing you and your end-of-life wishes.
As I mentioned in my previous post, having an Advance Care Directive (or a “living will,” if you prefer) in place is crucial for many reasons.
I was wondering to what degree federal and local government go out of their way to help you. Depending on your view on government, the result may shock you — or come as a confirmation about everything you’ve ever thought about government.
I’ve spent the last couple of weeks getting a comprehensive view of how well federal, state, and local government is prepared to help you draw up an Advance Care Directive (ACD). In the process, I read more than 1,400 pages (!) of PDF and Word documents. I browsed (well, I say browsed. I think “suffered” may be a more appropriate verb) through the websites of 50 different states. And I was mostly pretty disappointed.
Out of 50 states reviewed, I discovered that ACDs are…
- Mostly easy to find: 20% didn’t have end of life medical directives easily available, so that’s not encouraging. But it’s not all bad: In my research, it became clear that almost half of US states made their ACDs relatively easy to find.
- Poor quality information: 14% had reasonably good quality information available. The rest? Not so much.
- Poor, hard-to-navigate forms: The vast majority of the forms were downright bad. Only 20% of states had forms that were easy to follow, with relatively low risk of making mistakes.
- Too hard to read: I care passionately about plain English being used on documents that are aimed at such a broad section of the population. I checked whether the available docs were easy to understand. It turns out that documents were only easy to fully grok in 8% of cases. Which, I hasten to add, is really embarrassing for everyone involved.
The combinations of these findings are a bitter pill to swallow. I’ll get into the details later on in this article, but suffice to say that local governments are, on the whole, very poor at disseminating living wills, ACDs, and the information to help people make sense of them.
How easy is the documentation to find?
For some states, it was painfully hard to find any information about ACDs. This was often because there wasn’t any information available. In some cases, it was just a problem with the quality of government sites.
Quite frequently, the links from Google simply wouldn’t work, or the site was somehow malfunctioning. In two instances, the site didn’t work at all, and I had to check back later. In one case, I even emailed an Attorney General’s office to find a document, and I received a reply “Sorry, we are aware of the problem.” Someone more customer-focused might have dug out the document and sent it to me, but alas.
As you might imagine, the top 10 Google results in states that had poor quality information was filled with a very mixed bag of results. Some were confusing, some are actively harmful, but mostly, they were just disappointing.
Information availability Hall of Shame
- Colorado had one of the best forms from the Colorado Hospital Association (pdf), and there’s the Colorado Advance Directives Consortium, but it’s hard to ascertain from their websites whether they’re politically neutral and/or state-endorsed. The state itself doesn’t appear to have any easy to find documents available.
- Mississippi’s search got me onto a form from the Mississippi State University (pdf), but nothing from the state itself.
- New Hampshire was in a deep information drought.
- New Mexico’s information well was similarly dry, but did put me onto a VA resource that I kept finding again and again. Obviously, however, that only applies to veterans.
- North Carolina has a centralized advance care directive registry that does include forms for download, but the site lacks the typical indicators I look for (contact information, copyright notice, terms and conditions, privacy statement, etc) to determine whether the site is legit.
- Ohio also failed to pass the test; the closest I got was a page on the Ohio State bar association site that asks me for a password when I try to download a form… Oh, and there’s a local county that has pretty high-quality forms available, but nothing on a state government level.
- Pennsylvania had a very promising page listed on Google called “Advance Directives for Health Care or Living Wills,” which had my hopes up… Except despite checking back every day for over a week, the page in question refused to load.
- South Dakota was particularly poor; a search for “advance care directive” lands you on a page that only talks about Do Not Resuscitate orders and its Comfort One plan. If you aren’t sure about what these forms mean, you could potentially be set down a path filling in a form that does exactly the opposite of what you want.
- For some reason, Washington state’s forms and information were pretty good, but it was also surprisingly hard to find. To the point that I wonder whether the sys-admins for the Washington state site have screwed up their Robots.txt file…
- Wyoming was also a barrel of tumbleweed. Not a lot of useful information.
A lot of the information I found throughout my search was somewhat outdated, but a lot of the information was still solid. A few states that you wouldn’t expect to have great information available, did.
Interestingly, data show that states either did pretty well or pretty poorly here. How the state scores seems to be mostly a function of whether or not somebody set some clear objectives about what they wanted from the document.
There appear to be three different arms of government putting these documents together.
- If it’s done by the health department (or, in some states, a department that deals specifically with the state’s aging population), it tends to be a better document, aimed at helping the readers make better, more-informed decisions.
- If it’s done by the legal branch of government (whether it’s the state bar association or the Attorney General), you generally end up with terrible affronts both to language and design. There are exceptions, but on the whole, it turns out that people who are used to drafting legal language aren’t particularly well incentivized to make the information accessible.
- The final group making these documents appear to be the governor’s office itself, and then largely in states that have a larger proportion of aging populations. Florida, Montana and Vermont all have older populations, and have paid better attention than most to the advance care documentation they make available to theircitizens.
The lesson to learn here is that even if there’s a legal aspect to information, don’t leave document and form drafting to lawyers without additional adult supervision. Add a copywriter and an information designer to the mix, and you’ll get a very different (and far more accessible) stack of papers.
Some great examples
Florida deserves a special mention for putting together a very comprehensive guide called Making Choices: Beginning to Plan for End-of-Life Care.
The document is 14 years old and isn’t particularly well designed, but the content is thoughtful, interesting, and easy to follow. It’s pretty tucked away in a corner of their website, which is a shame; it’s one of the best documents I’ve seen in terms of explaining the issues at hand.
Missouri’s attorney general put together a guide called Life Choices, which stands out for two reasons. First, it starts the document with something other than legalese; namely, a set of questions to get you thinking about your values, spiritual leanings, and well-being.
The other reason this document stands out is that most of the documents produced by Attorney Generals’ offices are absolute drivel that is extremely difficult to follow. Well done Missouri!
Utah has a Tool Kit for Advance Healthcare Planning, which appears to have been created by the American Bar Association — but it’s distributed by the Utah document. It is also very good, and includes a section on “Are Some Conditions Worse than Death?” which helps give specific examples to get form-fillers thinking about where the edges of their comfort are. It may be a bit direct for some, but I found it a breath of fresh air. Go Utah!
A lot of the documents I found were obviously written up by lawyers, most of whom seemed determined to obfuscate the process as much as possible.
Yes, from a legal point of view it is useful to have a careful definition of what “Not able to make my own decisions” means, exactly. From a consumer’s point of view, however, once you’ve pushed past the first three pages of legal mumbo-jumbo, your will to live sinks into your shoes.
In my opinion (and, as a writer, I’m terribly biased here, but stick with me…) using poorly crafted information is a deep sin against humanity.
Especially in a context such as this, where compassion and clarity goes a long way, using esoteric legal language is a terribly effective means to scare people away.
It is entirely possible to err on the side of friendly and easy to understand. Vermont’s example is a great one, and even its most text-dense pages pass the Hemingway test with a Grade 6 reading level. In other words, the document is easy to read. For everyone. That isn’t that the Vermont docs couldn’t be improved. The form section, especially, could do with some love. But at least it isn’t as bad as this:
If I should have an incurable or irreversible condition that will result either in death within a relatively short period of time or a state of permanent unconsciousness from which, to a reasonable degree of medical certainty, there can be no recovery, it is my desire that my life not be prolonged by the administration of life-sustaining procedures.
Yep, that’s the introduction paragraph to the ACD forms from Iowa. This isn’t a form containing information. This is an extended linguistic assault on the English language.
If you’ve ever had the displeasure of having a committee of lawyers help you draw up a document, passages like the above will not look all that unfamiliar to you.
Iowa, you can have the below paragraph for free, re-crafted by yours sincerely in all of about 30 seconds. It has an 8th grade reading level. It uses short sentences. It’ll almost certainly not be as accurate as what you had, but at least you’ll make it to the end of the paragraph without needing first aid from face-palming too hard.
This document explains my wishes for what to do if my doctors agree I cannot recover. This includes if I have fallen into a permanent loss of consciousness. It also covers situations where I am likely to die even with medical attention. If my condition is incurable or irreversible, I don’t want further life support.
In the context of what we as a society are trying to accomplish with ACDs, making documents inaccessible is inexcusable. It’s almost as if Iowa’s writing team tried extra hard to make the document impenetrable — exactly the opposite of what we would want.
It is slightly unfair to single out Iowa. A large number of states had documentation that was confusing, frustrating, or downright unreadable. It’s a problem endemic to government documents in general, and it seems as if government loves to hide behind complicated language when discussing complicated matters. It’s laziness or cowardice — I can’t tell which — but either way, it’s absolute rubbish.
Anyway. In addition to Vermont, Utah once again deserves a honorable mention for its documentation, as does Missouri. Again, I stress that all of these documents could do with a little bit of polishing to make them easier to read. Compared to some of the hellscapes I’ve slogged my way through, however, they read as lovely, Harry Potter-level prose. Enjoyable and easy to understand.
On a form that could literally be the difference between life or death, you would have thought that they’d spend a bit of additional time on making sure it’s clear, unambiguous, and easy to follow. If you did think that, you’d be wrong.
The Kansas Bar Association deserves a particular black mark for its painfully short summary of what the document is. They subsequently deserve a swift kick to a sensitive body part for their ACD, which has no choices on it whatsoever. It’s less of a form and more of a letter, the purpose of which I still haven’t quite figured out, even after re-reading it several times. And that, ladies and gentlemen, is the sum total of documentation available from Kansas.
Luckily, there were states that didn’t make quite that bad of a hash of things. Missouri’s form is a combination of open-ended questions (“Describe what you consider an acceptable quality of life, for example, being able to recognize my loved ones, make decisions, communicate or feed yourself.”) and more case-specific questions. It works very well, and is clearly laid out making it hard to miss or misinterpret questions. It doesn’t score as high on readability, but the form itself is pretty good.
Montana’s form is pretty good too; it includes a load of information up front to help the reader understand what the form does. It is a PDF form that can be saved or printed after it’s been completed (which means it can easily be sent around, too, without scanning a hand-filled form). It lists several ways of getting legal help if you need it, and recommends speaking the form through with a doctor and/or a lawyer.
It does hilariously include the checkbox “I provide no directions at this time,” which makes you wonder why someone started filling in the form in the first place. (Actually, that’s not entirely fair: assigning a proxy without giving them directions is less than ideal, but you don’t necessarily need a form to give someone instructions about your wishes.) Montana’s is a well-designed form which covers a broad number of relevant issues, organ donation, comfort wishes, and instructions for how to enter the directive into the Montana End of Life registry. So that’s helpful, too.
I ran all sorts of statistical analyses against my data set to see if I could find any patterns. Unfortunately, little was forthcoming. The only real correlation I found was between the population of a state and their tendency to use simple language. It was a reverse correlation; the lower the population of a state, the more likely they are to have a readable set of documents. One could posit that this is partly because government employees in less populous states are closer to their constituents, and care about their neighbors more.
Other than that, it really does feel like the quality of the advance care documents on a government level is mostly dependent on if anybody cared about the job they were doing that week or not. The really good documents are clearly the results of projects executed with great compassion and diligence. Navigating the law might take some focus and assistance, but writing up a good information document and creating a good form for people to use isn’t rocket science. All it takes is for someone to have a clear goal (I surmise that making a document people can actually use is a good place to start), and to take the time to get it right.
In some sensitive matters, you may be able to trust your local government to act with empathy, care, and compassion. It appears that end of life documentation isn’t necessarily one of them.
In my research, I had more than a few moments where I wondered who the people behind these documents were. Whether they’re struggling under bureaucracy, a lack of interest in their jobs, or an active sadistic streak is hard to tell, but a for a lot of these documents — ostensibly aimed at the general population — I can’t think of any other explanation.
What happens in the last months, weeks, and days of our lives is a matter of great gravity. Having your wishes heard is a crucial part of that. We shouldn’t have to rely on poor information and worse forms issued by state government.
There are a few companies that are stepping up their game. Five Wishes is an organization that is helping, but has caught some criticism for being too religiously focused, albeit from an organization that’s quite aggressive in its “aid in dying” stance. Other organizations are also attempting to fill the gap left by the borderline negligence from some of the state governments.
There is still a lot of work to do, however. Enter LifeFolder. We’re embarking on a journey to help people have hard conversations. Including the one about what you would want to happen at the end of your life.
A few quick pointers about how I arrived at the data in this document…
I tried to find the state-specific documents regarding an ACD by using the following steps:
- Google “advance care directive form [state name].” If that didn’t yield a result on the first page of Google, try…
- Search for “living will form [state name].” If that didn’t yield a result on the first page of Google, try…
- Go to the homepage of the state government, look for a search box, then search “advance directive”. If no luck, try “living will.” If that doesn’t work…
- Try to locate the state’s health information page, and search from there.
In the links above, I use Rhode Island as an example, because it was one of the easiest to find.
- If a PDF document: Look at number of pages.
- If multiple PDF documents: Sum number of pages.
- If other document format: Print to PDF, then check.
Determining information quality
Quality of information can be very subjective, but I decided to read each document assuming I knew nothing about ACDs, living wills, etc, and see if the information covered the main points.
Determining form quality
There is an art to designing forms, and it’s very much a “I know it when I see it” judgement on my form quality scoring. To reach a perfect 10, the form would need to be well designed (i.e. easy to follow), easy to read, easy to fill in, and it should include information about what you need to do with your form once you’ve filled it in.
Determining “plain English” score
In this one, I was particularly looking for medical terminology. If someone says “CPR,” “POLST,” “Electroconvulsive therapy,” or “Mechanical ventilation” without explaining what they are or why they might be relevant, that’s a fail. Also, anything written for lawyers by lawyers is unlikely to get a high score here.
LifeFolder is on a journey to discover how people think about some of the hardest, yet most unavoidable questions we face in life. If this is a topic close to your heart, please consider staying in touch with us.