If you are like me, you probably have an advance directive sitting somewhere in one of your file cabinets. Perhaps, you filled it out years ago when you hit some milestone birthday (50? 60?) and decided that you should have a will. But I bet you dollars to donuts, it hasn’t been updated and it probably does not reflect how you feel about your end-of-life preferences now. But you haven’t changed it because, well, it is simply too much trouble to do it. In a well thought out opinion piece in the June 1, 2017 New England of Medicine, Joshua Rolnick, David Asch, and Scott Halpern lay out a case for simplifying the advance directive process by making the directives clinical instead of legal documents. It’s a brilliant idea.
According to the article, some states mandate the use of specific templates to create the advance directives document, and most require that witnesses or a notary observe its signing. These requirements lead to many advance directives being prepared in an attorney’s office. Online sites are available that walk you through the state-specific process of advance directive preparation. Caringinfo.org is an example, however, if it is to be legally valid, you have to print it out, get a witness or a notary to watch you sign it, and then scan it back into the site…talk about annoying barriers to completion.
The authors point out that decades of experience have made it clear that advance directives do not “exert the same control over medical care as wills have over the disbursement of property.” Disputes, primarily amongst family members, may lead clinicians to ignore the patient’s written wishes in favor of those of a distraught daughter or son. Because of this, the authors believe that advance directives should be considered clinical instead of legal documents.
Problems created by legal formalities
The paper describes three problems created by the need to have specific forms and witnessed signatures. Let’s examine each of them:
1. They create unnecessary barriers to completion
We already touched on this. The extra effort to search for and complete a state-specific form, the need to download it and print it out, and then find a witness or notary requires resources that not everyone has (computer, good internet, scanner, transportation, and so forth). It is time-consuming and can easily derail the best of intentions. It also creates a barrier to updating the document as you will have to do all of those things again if you change your mind about your preferences. The authors point out that advance directives prepared in this manner are “perceived as static, perhaps even irrevocable, rather than as one element of an evolving process of advance care planning.”
2. They impede the transition to full technology solutions
As we move more and more of our lives online, completing tasks thought impossible without bricks and mortar only a decade ago, many of us have come to expect to get done what we want to get done—beginning to end—with a 15-20 minute online session. Leading-edge companies, like Amazon, have made the process of buying almost anything seamless from searching for the item to 1-click payment. Any glitches can bring the session to a halt and may lead to the buyer abandoning the site. Because of the “print, sign, witness, scan” aspect of completing online advance directives, many people, including myself, have abandoned our partly filled out directives never to return to the site where they reside. One particularly troublesome issue is that of electronic signatures. These are now accepted in even the most weighty of legal documents such tax filings and mortgage applications, but according to the paper,
“…neither federal nor most state laws on electronic signatures address advance directives. Given the uncertain legal terrain, most online advance-directive platforms consider electronic signatures insufficient.”
3. The legal model moves care planning from the doctor’s office to the legal office
In many cases, dying takes place over a prolonged period of time. Consider a cancer patient. First, there is the body blow of the diagnosis. Then, there’s the consolidation of a will to fight. But as treatments fail and options grow limited, there is a recognition that planning the end of your life now has to be one of your priorities. You may have filled out your advance directive near the time of your diagnosis or you may have waited for the first relapse, but death from the disease still had an aura of uncertainty and your advance directive choices were based on that. Farther along, with very limited treatment options, but a momentous life event—say the birth of your first grandchild—on the horizon, may change how you feel about certain heroic interventions that you thought you would forgo earlier. The point I am trying to make is this type of dying is a journey and the path is not a straight one. You will be consulting your physicians, you will be having intimate family discussions, you will change your mind—and that’s ok. But your advance directive has to change with you or it is worse than useless. The document has to be accessible, changeable, and easy to share with anyone you want to have access to it if it is to serve the purpose of guiding your end-of-life care. A clinical document can easily do this, a legal document cannot. And, as the authors point out there is the question of cost:
“Medical appointments to discuss end-of-life planning are typically covered by insurance, whereas visits to lawyers aren’t”
And, “most people have a doctor, but only some have a lawyer.”
Preventing court battles and protecting the vulnerable
There are two main concerns proponents of legalistic advance directives raise:
- They may prevent court battles.
- They may protect vulnerable populations, such as patients in long-term acute care hospitals from fraud.
According to the paper, there is no evidence for the former. and the authors suggest that “states concerned about potential fraud might consider maintaining limited legal requirements for particular categories of vulnerable patients.”
Overall, I believe the authors have made a compelling case for changing advance directives from legal to clinical documents. The advantages of having a document that is easily modifiable to reflect the changing wishes of an individual and their loved ones as they navigate the last part of life far outweighs the concerns of those who advocate for a legalistic approach. People who want legal advice at the end of life for other reasons (i.e., wills, estate planning, and so forth) can still access it, but one of the most intimate of all of the documents that guide end-of-life care, the advance directive, should be humanized by taking it out of the lawyer’s office and putting it into the doctor’s office. I sincerely hope policy makers will heed this advice.