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.

Image for post
Image for post
A deep dive into government treatment of advance care directives results in a colorful spreadsheet including all of your favorite colors, as long as your favorite colors are red or green. So that’s pretty exciting.

Summary

Out of 50 states reviewed, I discovered that ACDs are…

  • 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.
Image for post
Image for post
I read a lot of pages of documents, so you don’t have to. In fact, I strongly recommend you don’t — a lot of it was slim pickings in the quality department.

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.

Image for post
Image for post
Finding information on state sites about ACDs was easier than I feared. The average score across all states was 7.05, with a median of 8.5. Not too bad, but plenty of room for improvement.
My frustration. It was loud.

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.
Image for post
Image for post
So close and yet so far.
  • 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.

Information quality

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.

Image for post
Image for post
Quality of information ratings were more divergent. Some were very good indeed, while others leave a lot to be desired. Average was 5.63, Median 5.5.
  1. 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.
  2. 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.

Some great examples

Image for post
Image for post
Missouri’s documents are values-led, which is unusual. It is also extremely helpful to further understand a patient’s wishes.
Image for post
Image for post
Utah’s documents focus on a customer’s wishes, fears, and priorities. It makes for a great discussion document to help instruct your medical proxy and to explain your choices to your family. Best of all, it dodges medical jargon in the process.

Plain English

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.

Image for post
Image for post
On average, the score on my “Plain English Meter” was mediocre. An average score and median of 6.
Image for post
Image for post
Great example from Vermont here. Short sentences. Easy to follow. No unnecessarily big words.
Image for post
Image for post
That’s Iowa giving the English language a kicking by starting its ACD form with a 60-word run-on sentence and an attempt to scare everyone away as quickly as possible. Readability analysis courtesy of the Hemingway writing tool.

Form quality

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.

Image for post
Image for post
The vast majority of forms were pretty poor, for a variety of reasons, the major of which is probably that making a good form is quite difficult and really requires a good designer to get right. Average score: 4.4. Median: 4.
Image for post
Image for post
My directions are… You’re on your own, good luck.

Conclusions

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.

Image for post
Image for post
Utah’s form made me giggle, when they suggest that “Blame it on your attorney,” might make a good excuse for forcing a conversation to happen. It also seemed apt advice for a lot of the poor forms out there. Blame it on your attorney, indeed.
Image for post
Image for post
South Carolina sidestepped the issue of creating its own documents by simply passing the baton on to Five Wishes. Which, given the quality of the supporting documentation issued by the state, is probably a wise move.

Methodology

A few quick pointers about how I arrived at the data in this document…

Finding ACDs

I tried to find the state-specific documents regarding an ACD by using the following steps:

  1. Search for “living will form [state name].” If that didn’t yield a result on the first page of Google, try…
  2. 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…
  3. Try to locate the state’s health information page, and search from there.

Determining length

  • 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.

Written by

CEO of Konf, pitch coach for startups, enthusiastic dabbler in photography.

Get the Medium app

A button that says 'Download on the App Store', and if clicked it will lead you to the iOS App store
A button that says 'Get it on, Google Play', and if clicked it will lead you to the Google Play store