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ore and more Americans say they want a “good” death, which usually means dying peacefully at home, surrounded by loved ones. Documents called advance directives can help them achieve that goal by increasing the chances that the care they receive near life’s end aligns with their goals and values. Unfortunately, advance directives have been mired by legalities that limit their utility and even discourage their use. It’s time for that to change.

Although most Americans say they prefer to emphasize comfort when they’re near death, aggressive treatment remains the norm in American health care. In the last month of life, half of all Medicare patients visit an emergency room, one-third are admitted to an intensive care unit, and many have surgery. Ironically, this disconnect between what people want and what they often get is facilitated by well-meaning but misguided laws governing the completion of advance directives.

Advance directives have two parts. The first is a living will that spells out an individual’s wishes for end-of-life care. It might say, for example, whether or not she wants to be placed on a ventilator, or, perhaps more importantly, what types of health states she would consider to be intolerable. The second part is a health care power of attorney that specifies the individual’s chosen decision-maker. By law, advance directives usually require the signatures of two witnesses or a notary, with specific rules varying by state. In some states, approved templates drafted by lawmakers — not clinicians — are the preferred ones.

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Only one-third of Americans with advanced illnesses have advance directives, as we found in a recent systematic review in the journal Health Affairs. At the hospitals in Philadelphia where we work, seriously ill patients rarely have directives in their medical chart. For a research study, one of us (S.D.H.) screened more than 9,000 patients at dozens of clinics across Pennsylvania who were expected to live less than two years, and found that only 2 percent had advance directives in their medical records.

Sometimes the documents remain home in a drawer, unavailable to family members and physicians as they gather in the hospital to make decisions. But even when they are available, they often give poor guidance about an individual’s true wishes. As we argue in a recent article in the New England Journal of Medicine, each of these failures can be traced, in part, to the law.

It may seem intuitive that something as important as an advance directive should receive special legal protections, but experience reveals the opposite.

First, laws make advance directives harder to complete. An individual can sign a consent form authorizing major surgery during any doctor’s visit, but can’t create an advance directive unless accompanied by two witnesses or a notary. This need for witnesses or notarization seems to reduce the likelihood that seriously ill individuals who want to complete an advance directive will ultimately do so.

Second, the barriers to creating advance directives also make them more difficult to change. That can make the living will nearly immutable, even though end-of-life goals often evolve with experience and circumstances.

Third, outdated laws regarding advance directives may prevent us from leveraging newer technologies to improve care. We and others have developed web-based platforms that facilitate the completion of advance directives and their integration into electronic medical records. Yet these platforms typically require written signatures rather than electronic ones so the document aligns with state laws. That’s a problem. After one of our own family members — a 99-year-old man who recently moved to an assisted living facility — completed an advance directive online, he was frustrated to learn he then had to print it out, sign it, obtain the signatures of witnesses, and scan it back in. As we found in another recently completed randomized trial, only 25 percent of people who completed an advance directive online subsequently obtained the written signatures on a printed form so the document would satisfy state laws.

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Finally, the current rules around completing advance directives shift the process from the doctor’s office to the lawyer’s. That doesn’t make sense. Far more people have doctors than lawyers; they see doctors as more relevant to these decisions than lawyers; and the cost of a visit to the doctor might be covered by insurance, but a visit to a lawyer won’t.

Soliciting the advice of a lawyer to complete what is fundamentally a medical directive is like getting advice from your doctor about completing your taxes.

An advance directive must incorporate a nuanced understanding of an individual’s medical history, treatment options, and foreseeable setbacks, which only a clinician can provide. Further, completing a directive in a doctor’s office helps ensure that the form is accessible in the person’s medical chart. And when people are dying and their circumstances come into sharp focus, they are typically with their doctor, not their lawyer.

Lawyers may argue that extra legal protections around advance directives prevent fraud and send a clear signal to courts. Yet there is no evidence that witnesses or notaries reduce fraud. And it is rare for an advance directive to trigger a lawsuit — our large medical centers haven’t had such a case in at least 20 years. In any event, courts frequently adjudicate disputes over medical care without the benefit of notarized documents, and are equipped to do so whether the subject is end-of-life care or another matter.

The good news is that reform requires little effort. Advance directives are controlled by state law. We urge states to make three minor modifications:

  • Eliminate requirements for witnessing and notaries. After all, we don’t require them for other high-stakes medical decisions.
  • Clarify that electronic signatures and non-statutory forms are valid, just as they are allowed for other important documents.
  • Minimize differences between states. An individual’s wishes for end-of-life care don’t change because he moves from Arizona to Maine.

With modest changes to well-intended but counterproductive laws, advance directives may help give people the voice that they and their family members deserve near the end of life.

Joshua A. Rolnick, M.D., David A. Asch, M.D., and Scott D. Halpern, M.D., work at the University of Pennsylvania. Rolnick is a consultant to Tuple Health, Inc.

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  • Good article, and good suggestions. It’s horrifying to me how frequently people’s wishes are disregarded by doctors and by relatives who feel free to disregard their intentions (often meaning well and fearing they would be guilty if they permit death). We should not make it harder and more burdensome to refuse treatment than to permit treatment. Too many people die in ways they do not want, sometimes tethered to prevent their ripping out ventilator tubes. Better if their wishes not to be put on a ventilator can be honored, but they often are not.

    Yes, a doctor who knows one would be of far more assistance than a lawyer in presenting a realistic view of what may transpire and helping make sure the person can have some control over the possiblities (even though yes there is much no one can control).

    The “living will” movement has largely failed because so often it just doesn’t make any difference whether you have an advance directive. Of course if one has a good surrogate that can be designated as decision-maker, that can help, but not everyone has that or agrees with their family about what to do.

    • How? Do you think doctors are just itching to press their patients to have too little treatment? If anything they are like all of us and very reluctant to forgo treatment if it can possibly help. And doctors do not typically benefit in any way from their patient’s decease. I agree this belongs in the doctor’s office. Although, it would be pretty easy to have the medical employees witness the signature and have someone in the office become a notary, but don’t think this is of great import.

    • Spring Texan: I am thinking more along the lines of overeager/involuntary/coercive commitment of patients into medical facilities in which doctors, lawyers, and marketers have financial stakes. This may not be widespread, or may not getting a lot of attention yet. I don’t know. But I’ve seen it through my job, and I’m sorry I can’t go into more detail in a public forum. Anyway, that was my thinking, to keep every safeguard there is for the patient, not to take away their freedom to make decisions. On a personal note, I had a doctor recently tell me, I believe and hope erroneously, that it was now “required under the law” for every patient to have an advance healthcare directive. That makes me really queasy. This is something that should be left up to the patient’s initiative.

    • Oh, I am in total agreement with you about anything that would permit commitment to a lucrative facility — and yes that has certainly happened especially with mental health patients. I don’t see this relaxing of restrictions on advance directives as being a means to accomplishing that, but agree that that is on occasion a danger and to be avoided at all costs (those doctors are in a very different position from your average family doctor, whom I would not worry about). (and few doctors are like this, but those that are are total menaces, and there have for sure been some awful examples)

      As to the doctor that told you that patients are required to have advance directives, that sounds very strange, and I agree with you that it should definitely not be required, even though I think it is to be encouraged (and after all, some patients just cannot decide, or cannot contemplate advanced illness, and prefer to let others decide). I am in a lot of doubt that any state can or does require it, and it sure bothers me when doctors say stuff like that. (This is similar to doctors telling patients that insurance won’t cover a hospital stay if it is AMA, which isn’t true.). But very interesting that you were told that.

    • I understand you can’t talk about your job, and why. Besides mental health patients, I have also gotten some intimations that this coercive commitment think may be happening now with opioid addicts with lots of profit to be made, and I’m definitely opposed to that and worried about safeguards. There are definitely some sleazeballs who will without compunction exploit people for money, and yes it worries me.

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